View Full Version : Very depressed, no hope in sight
02-22-2008, 04:56 PM
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. :mad:
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:
Pretti in Pink
02-22-2008, 05:45 PM
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!
02-22-2008, 05:56 PM
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?
02-22-2008, 06:01 PM
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.
02-22-2008, 06:11 PM
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.
Or just www.lupus.org
Copy and paste to your search bar.
02-22-2008, 06:15 PM
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.
02-22-2008, 07:17 PM
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.
sick n tired
02-22-2008, 09:04 PM
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.
02-23-2008, 02:19 AM
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.
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.
02-23-2008, 06:25 AM
Some local hospitals and clinics have their own 'benevolence' funds or foundations to help those that are un- or under-insured. You might check on that. And if you do decide to go into the doctor, after you've seen him, go directly to the business office and find out what arrangements they will accept for payment. I've worked in the financial counseling field for nearly 20 years, and I'm here to tell you that just because you're making a payment doesn't mean a clinic or hopstial won't send your bill to a collector or file a judgement against you in court. That's, unfortunately, a myth that has gotten many a well-intentioned consumer into trouble. (Sorry Oluwa...had to burst that bubble... :oops: ) BUT being proactive and getting a plan in place with them right away can make all the difference. If you can, get a payment arrangement in writing - and be sure to follow-through. Don't promise anything you can't live with; and if you run into trouble, let them know right away if you can't make a payment that month. Staying in touch with them is key.
Others are right...you could end up with much greater expense if you ignore your symptoms. I was in and out of the ER for months before they figured out what was wrong. Thousands of dollars each time... We had really great insurance then, thank the good Lord, or we'd still be paying for it.
Sending the warmest hugs to you....let us know what you decide to do...I hope you keep your appointment.
02-23-2008, 07:41 AM
Are you referring to my urethra bubbles?
Ditto on the paper arrangment for payment...
And how are you today?
02-23-2008, 08:30 AM
Oluwa...Hmm...multiple reference to bubbles....does get confusing...sorry!
I'm hangin' in there....been better; been worse. How's that for non-committal? :roll:
02-23-2008, 08:33 AM
No, no sorry needed..I was playing on words... the bubbles...chuckling.
Granddaughter with you? Enjoy your day together...
02-23-2008, 08:39 AM
No, she's not here yet - we pick her up in a couple of hours. She loves coming up here. We live on 10 acres in the woods and have a great house for playing hide and seek (lots of rooms; 3 floors.) It'll be fun - hubby will do the up-and-down-the-stairs seeking part. He's the big kid in the family.
02-23-2008, 08:30 PM
I think a lot of experienced loving lupies have given you some awesome advice. Keep your doctor's appointment and stay on top of your health. You have to take care of You. I like Oluwa's suggestion; drive an hour to see someone on your list. I would do it in a heartbeat in order to cut the costs down.
Please keep us updated. You are in my thoughts and prayers.
04-03-2008, 01:04 AM
I have been away from this board since February. I haven't wanted to really talk to anyone about cancelling that appt. So, I never read all the replies to my post until tonight, at 1:58 in the am, while I am at work as a 911 dispatcher, on the grave yard shift.
I was so humbled by all the love and encouragement everyone offered me. It amazes me that every person on this board is having to deal with so much of their own pain and that their worlds are just as overcome with Lupus as mine is, and yet, here you all are lifting me up. I am truly humbled.
At the same time, the things you have said have empowered me, at least for now while Im sitting here with tears in my eyes. I know what I am going to do when I wake up tomorrow afternoon. Im calling that rhuemy and getting a new appt and this time I wont be cancelling.
This flare I am going into is feeling particularly bad. I think my work schedule has kind of either triggered it or is making it so much worse. I work 12 hour shifts, three nights a week. I try to sleep as much as I can during the day, but, the aches and pains keep me from getting restful sleep, and after a while it doesn't make much sense to stay in bed when it hurts so much, but, I wonder around the house in a daze with red burning eyes and often fall asleep sitting up in a chair. Im averaging 4 to 5 hours of sleep a day. On my days off, I can't seem to get my body clock to level out at all.
It's crazy. I'm 48 years old. I can track my first real flare to when I was 22 years old, but, I had a lot of symptoms for years before that. I actually think Ive had it since I was a kid. A lot of things would make sense if that were the case.
My SED rate is high and has been for years. I have a pages long documentation of all my symptoms, showing the effects in all of my systems. Up until the past couple of years it has all been pretty manageable, mostly because I didn't understand what I was dealing with, I just, like my doctors, attributed my symptoms to many different illnesses, like the flu, some inflammation somewhere in my body, pneumonia, pluerisy, migraine headaches, arthritis, allergies, and on and on. Now that I have put all the pieces together, and my doctors are finally saying they suspect Lupus, I just want to get it over with. But, I also don't want to start the roller coaster of medicine after medicine, one to treat the symptom and another to deal with the side effects, etc. Im afraid, but, I know I have to get through this.
My DH does love me. I know he would just rather it not be true. He just wants me to be healthy and "normal" so he doesn't have to worry or be afraid. I know that if he truly understood the seriousness of ignoring Lupus, he would be the first to take me to the doctor. He is in denial. Or, he is hoping I am just imagining things and that none of this is really going to turn into anything.
I am ready to take the next step and its because of you wonderful, caring board members. Im so glad I joined.
04-03-2008, 08:10 AM
See my reply to your other posts. I was a bit abrupt, but I still stand by my statements. Your hubby and your family need to know that this is a serious illness that can be fatal. You must see your doctor so that you can be treated.
I am so happy that the response from members here uplifted you and made you feel empowered. We are here for you!
Peace and Blessings
sick n tired
04-03-2008, 10:14 AM
I am soooooOoo relieved that you are calling a rheumy and getting seen. I have thought about you often and wondered if you were still in your flare. I thought that the lack of response was meaning that you cancelled your appt.
I am sorry that my last message was over the top, but my offer still stands, if your hubby would like to talk to another hubby then mine is the guy. I do not doubt that your hubby loves you, mine does, too. Sometimes we or they can get the attitude that if we sweep it under the carpet then it may go away, or if I can't see it it isn't there. That is a game I like to play, too.
Please let us know when you see the rheumy and what he says. We are here for you.
04-03-2008, 10:23 AM
Glad you are on your way Teresa,
No matter what, seeking treatment is the lesser of two evils. Yes it means endless blood tests and appointments and medications; but the alternative is not something you want to experiance. I watch my mother go untreated due to an ignorant doctor who thought she was just making things up. Even though some of her problems were visible to the eye, that dorkfaced baboon boy couldn't diagnose the common cold if ya sneazed all over him...oosp sorry my anger is showing again.
Any way...it's better to get treatment :) Glad you came back to us :) Getting off my soap box now :)
04-05-2008, 11:59 PM
I am glad to hear you are calling the rhuemy. It is the first step to controlling and management of this disease. I was worried like Karen; that you had cancelled and given up. You need to take care of You. I am so relieved to read your post tonight.
Please keep us updated and I hope all is well.
04-06-2008, 08:58 AM
So glad you decided to take charge and go to the appointment. Get 'er done. Your DH is just worried about you, stressed about the finances, etc. I know. I live with this also. When I finally received the big "L" diagnosis, my DH's first words were, "Well, I don't think you have it." (Mind you, I was given this diagnosis by the medical director of the Lupus Foundation of America, who happens to be a practicing physician here at a medical research foundation. Her practice is limited strictly to patients who fit the clinical criteria for Lupus and APS.) He knows who she is. So, I just grinned at his response...not to his face, of course. :lol: He was like a little boy. It was a reaction based in fear because he loves me. Actually, it was quite funny then and it still is. It took him a couple of hours to work through it. I left him alone, and went on about my business. I found in dealing with my DH that the more I take charge of this, the better he handles it. Now, when I tell him I need to rest, he asks me if I need a blanket. It takes some getting used to for everyone.
BTW, you might check with your law enforcement agency to see whether there is a fund established to assist with medical bills, etc. for officers and other law enforcement employees.
Please keep us posted and hang in there. You will get to the bottom of this. I hope you are feeling better today.