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Thread: Very depressed, no hope in sight

  1. #1
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    Default Very depressed, no hope in sight

    I was just a week away from seeing a rheumatologist, on the 27th, and I have to cancel my appointment. We can't afford one more medical bill. My go round in the ER cost us big time, and then all the tests and the doctor's appointments, it just ate up what we had for medical bills. I can't justify spending what I know will be hundreds, and perhaps thousands of dollars on a specialist and the tests he will want to run, plus whatever the treatments will end up costing. We are covering two mortgages, trying to get our old house ready to sell, plus all the regular expenses, and my job has gotten so stressful, I just come home and sit and don't want to move.

    We looked at our budget and DH gave me that look of "how can we afford this, and we don't even know if you have Lupus". "You don't always look sick, and maybe you'll be fine since you have had this stuff for so long", "after all, you're not dying"

    He doesn't understand, I know that, but, he has a point. I have lived with it for most of my life, and have been symptomatic for 25 years now. But, at the same time, I feel like I am asking for trouble by waiting. I feel like no one really cares or believes me when I tell them I have Lupus, or that I have anything. Maybe I am imagining it all. Like I really want to feel this way.

    I hate this, I hate the way I feel. I don't want to go through a bunch of tests, or take meds that will change the way my body functions, even though it's not functioning so great without them, at least Im not taking meds to counteract the affects of meds. we really can't afford to pile on the medical bills, at least not now. Our insurance sucks. It covers nothing and we have to pay out over 2500 before it will even pick up 80% of what little it will consider a coverable expense. The only two rhuematologists in the county are not part of our insurance provider list, so, we will have to pay most if not all of their fees or drive 100 miles every time I have to go to the doctor.

    It took a month to get this appointment.

    why can't I have something easy to diagnose in one round of tests. The only definitive test I have is my sed rate test, it went from 30 to 50 in a week, and usually hovers between 50 and 100 all the time. So, I at least know something is going on, but, cant look people in the eye and say, I have lupus. :cry:

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    I am so sorry your are feeling this way and experiencing the financial strain. Have you tried looking into government assistance? There may be some programs out there that could ease the burden. Maybe some others will chime in with some suggestions where you live, until then know that I have already prayed for your health and strength while you work through this. Hang in here and keep reaching out to us, don't give up!

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    Default teresaa40

    hugssss...awwww so sorry to hear how things are going. You have some tough choices to make. I dont know what I would do in your possition.

    I live in Canada so a good percent of my medical bills are paid for by insurance and the government. I pay a percentage, but it's workable.

    I'm not familier with whats available where you are for support. Perhaps someone else here can help you out with services in your area.

    As far as a clear diagnoses...that can take forever. If you can manage it, I'ld keep that first appointment. It's important and they may be able to stear you towards some financial assistance. Or at least help you to manage with some basic things you can do for yourself.

    Is there a lupus society you can contact? Some places have support groups you can contact.

    Be kind to yourself....you know how you are feeling. Other's may not understand and that's really a shame. But it's up to us to take care of ourselves emotionally. That is very important. Lupus can be aggrivated by stress...try to do some things to relax yourself...deep breathing excersizes, meditation, listen to soothing music....

    East sensibly, excersize (just do what you body will let you) Get your rest. Treat your self the way you would treat your best friend. These things do help. I know it's hard to remember to be kind to yourself.
    There is a section on the is site for spouces of people with lupus, perhaps your DH would be interested in checking this out. It may help him understand.

    Where are you? In the states?

    Soft hugs

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    Im in Utah. We work in law enforcement, dh and I, and our employer has changed our insurance so much that it doesn't really qualify as insurance anymore.

    But, because we make more than is allowed, we don't qualify for any assistance. It's a catch 22.

    I would keep the appointment, but, my dh just doesn't want me to, and I feel like I have caused him enough financial stress, I just don't feel like it would be good to keep dumping it on our finances.

    I don't know what to do.

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    How much is it for the appointment? Have you looked to see if there is a lupus society near you? Try this site, you need a zip code to find a chapter near you.

    http://www.lupus.org/webmodules/weba...=277&zoneid=76

    Or just www.lupus.org

    Copy and paste to your search bar.

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    Default This was on the lupus.org site...you should check it out

    Find Local Resources
    The Lupus Foundation of America has a nationwide network of nearly 300 chapters, branches and support groups to help individuals with lupus, their families, caregivers, and health professionals.

    Find the chapter nearest you
    The Lupus Foundation of America (LFA) provides many of its direct services through a nationwide network of chapters, branches and support groups. Chapters conduct programs of public education and information, patient education, professional education, and advocacy. Chapters provide support to people with lupus, their families, and health care professionals.

    Find a Doctor
    To locate a physician in your area, contact your local chapter of the Lupus Foundation of America. They can provide a list of physicians in their service area who diagnose and treat lupus.

    Find a Support Group
    LFA Chapters establish and operate local lupus support groups. To find a support group, use the link above which will help you find the Chapter closest to you. Your Chapter can tell you where and when support groups meet in your area. If there is not an LFA support group in your area, ask the Chapter if they are aware of other people who have inquired about support.

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    Teresaa...

    As long as you make some kind of payment to you medical bills, they can't default you. Arrange for 10, 20 dollars a month till you can afford more. Don't promise them anymore than you afford monthly.

    You must go to your appointment, by going there you may prevent future ER visits bills. Prevention is your insurance. No prevention, as in health care, medicine, tests, you just may end up being too sick to work to pay two mortgages. Now that would be an even bigger pickle...no? Ask for a payment arrangement...

    My question "How can you not go?"

    Afterall you are not dying??@#!*? :shock: I don't undersand that logic. The key to keeping Lupus from being life threatening is prevention. Prevention is medical care, is less stress, is proper nutrition, is exercise, is rest, and again less stress...

    And if your dead, well...gee, then what? He will then pay for the bills himself. Sorry for my directness, but his words you wrote, well, they hit a nerve within me. Us Lupies are all alike, we stick together...

    Drive the hundred miles...one tank of gas, $40.00 maximum..beats full price doctors bills.

    You don't have to have a "Lupus" diagnose to treat the symptoms...They won't give you a diagnose till you have at least 4 of the 11 criteria. And they can be accumulative not all at once. They can still treat it as though it was....they just won't put it to paper...

    Do you maintain a journal of your symptoms, of all you hospital visits, ER trips...what brought you to the ER...list any prescriptions...to help with a diagnose?

    Have you had an ANA test? Negative doesn't mean you don't have Lupus.

    What leads you to believe you have Lupus? Symptoms?

    Do you have mail order prescription...could easily save $70 on one prescription for 3 months..

    So that is my lecture...filled will love and hugs.

    Now on a personal note..don't worry. I know it can be hard. Take five, relax...breathe, stretch and look everything over again. Take one day to call all the medical providers and make an arrangement for a small payment...

    If you canceled you appointment, call and see if it is still available...

    When you feel you have some control over the situation the stress will alleviate a bit...

    Now pick up your smile off the floor...take a warm bath and let it wash away your thoughts for at least a half hour...and when you step out, it may help so it isn't so overwhelming...

    Prayers for you will be heard by him from me, and from us...we are on your side.

    Head hug,
    Oluwa
    I have Lupus. So *^#@! what.

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    Hi Teresa,

    I SO have been where you are. Perhaps my hubby should talk to yours. He said the same things to me for years.I stopped going to Doctors altogether. I knew there was something wrong but Dh and others would give me that look....you know the one...the one that says It is all in her head. I came to a point to where I believed that it was.

    I have 2 really great friends. They spent some time with me this summer. Both were very worried about me. So I finally went to a doc at a clinic. I told hem the miriad of symptoms and he did a very extensive bloodwork up on me. Some things game back..........you, Teresa, already have the SED rate to show. Not everyone has that.....

    My brothers were furious at my husband when the bloodwork came back. My husband was very sorry. All the sudden he realized that I could die and the liver stuff could have been handled years ago now we can't go back.

    Oluwa is right. Your DH is playing russian roulet with your life. Don't you play with him. GO TO THE DOCTOR!!!!!

    So what if the tests are inconclusive as alot of the autoimmune tests are.
    SO.....you have the groundwork and can work from there. You have something and IT CAN KILL....

    As Oluwa said...our best defense is prevention. Each flare can kill part of needed organs. Some of them you only have one of. Let him read our posts, Teresa. PM me if he needs to talk to another man who is just trying to lead the family and stay out of debt. I guarantee that my spouse will talk to him. I will give his cell. He is so there.

    I am not attacking your DH. I understand where he is. I live with someone like him and I know my spouse loves me. I also know you as if you are me. You think that you will feel guilty if there is debt and what if there is not an answer.

    Teresa this is real. You are worth sacrifice. The same sacrifice that you would do for DH and anyone else in your family. PLEASE, PLEASE.....DO THIS FOR YOU, you are worth it.

    Forgive me if this is a little over the top. I care if you live or die.

    Hugs,

    Karen
    I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost

  9. #9
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    My mother passed away suddenly. That's how we found out she had lupus. The doctor said she died of a heart attack....I wasn't buying it. She had been repeatedly going back to him with a long list of ailments and he NEVER took her seriously....so forgive me for what I'm about to say.

    Some people can be HUGE jackasses, and anyone who gives you the run around can go pound sand.

    I insisted that an autopsy be done. It was a novel! and the story it told was lupus. There wasn't an organ in her body that didn't just shut down. Her heart kidneys liver lungs even her brain. I cried and cried and cried. The amount of pain that woman must have been in...god...sorry it still hurts so much to think about it.

    I took the autopsy to my family doctor who my sister also sees. She called us both in and said she wanted us tested and that every one else in the family should be tested too. My sister came back positive. That explained the five misscarrages she had. I tested negative and was showing no symptoms...but guess what....I'm showing them NOW. Even with the same doctor who know's my mom had and my sister has lupus she was hesitant to refer me on to a specialist.

    It took some threats on my part to make it happen. I told her I was so stressed out about this, and there was no point in leading a healthy life style if my needs were going to be ignored. I was going to start smoking again. I wasn't kidding....I was pissed off!

    Everyone is quite right....you think you have bills now...that's nothing....unless you get yourself sorted out you can expect more hospital bills. But if you get in to see the rhuemy and get on some medications....you will feel better and be able to function better. AND you could even go into remission.

    How old are you if you dont mind me asking?

    My sister has been in remission for many years now.

  10. #10
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    Hi there Teresaa,

    Two things stand out in your story of whats happening to you. The phrase "You don't look sick all the time", and "You're not dying" seem to be the standard lame responses to people who have been diagnosed with, or believe they may have Lupus. I am 6'1", 220lbs, I have a full head of hair, I'm in OK shape, and I constantly have people saying "well he's the rugged outdoor type, and he looks good, how can he be sick?" The veteran news anchor Peter Jennings looked fine, and sounded fine, and he was dying of lung cancer. He only showed symptoms near the end. I don't understand how intelligent people can just look at someone and label them healthy, when so many diseases show little to no physical signs. And the part about dying, I think another news man, Charles Kuralt, would have something to say on the subject, unfortunately he died of Lupus. His symptoms came on suddenly and took him before he knew what hit him. Screw everyone else, go see your doctor. Get angry, give some attitude back, and do what you believe is right for you, and your health.

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