View Full Version : I just want to scream and scream

04-03-2008, 12:30 AM
I am so frustrated and depressed. I dont think there is even a little smiley face that would fit how I am feeling, I'd have to put three or four of them together just to show how torn I feel.

I had to cancel my first and only appt with a rhuematologist. I finally get my doctor to agree to refer me out to a specialist, simply because of my sed rate being so high and flucuating from pretty high to seriously high, and then I get the ER bills and the bills from all the tests to get to that point, and the accompanying looks from my DH over how we are going to pay for what we already have "rung up" as he puts it, and the two mortgages we are juggling until our old house finally sells, and I just can't go through with it. I called and cancelled.

I also cancelled the holter monitor, and the test for sleep apnea.

I don't know what to do. I feel like DH is not really taking any of this seriously enough, but, at the same time, we are in such a financial bind, and with the economy on tenderhooks, I can't justify in my mind running up the kind of medical bills that are bound to come from seeing a specialist who will undoubtedly want to run his own tests, and prescribe medicines, etc. Our insurance is terrible, and we will have to pay out over 2000 dollars before they will start paying the 80 percent they will cover, and then only on the things they cover for that much.

Maybe later in the year, when DH has used up that 2000 on his hormone therapy pills, and we are looking more realistically at the 80/20 kicking in right away, I can reschedule.

In the meantime, I feel kind of resentful that he is having his medical issues treated, but, I can't even go in for a diagnosis. Im in the beginning of what is promising to be a nasty flare, and I am far too cranky and exhausted already to try to fight about it. I want to scream, and cry, and tell everyone to leave me alone. I'm sick, and I'm tired. I want to sleep, and have someone else do the cooking, and the cleaning, and not the kind of cooking and cleaning they think is sufficient, but, the kind that they have come to expect me to do, and they say they don't want me to go to the trouble if I don't feel well, but, if I don't nobody eats decently, and the house gets dirtier and dirtier and they just bicker over who is responsible for taking up the slack.

If I have to mediate one more argument between my two teenagers and my dh over chores and who's turn it is to do the dishes, just to have them sort of done, but, pots and pans not washed, and the stove covered in spills, I know I will lose it.

Does anyone else feel like they have to pretend they don't really feel that bad. Like if they give into how they are feeling, or tell anyone about the latest rash, or other symptom, they will just cause their family more frustration then it's worth. Does anyone else's significant other show little interest in being educated about Lupus, as if it will just go away eventually so why go to too much effort? By not getting into a rhuemy after having this disease for at least 30 years, am I asking for problems? I just don't know what to do or think. Just want to crawl in a hole and pull the sod in after me.


04-03-2008, 01:06 AM
I posted this and then I went and looked at another thread I had started over a month ago. So much good advice, and so much love. Thank you all.

04-03-2008, 08:06 AM
I am so sorry to hear that you had to cancel your appointment. And, yes, I agree that it is unfair that your medical needs must go unmet, especially given the fact that if your symptoms are not treated, they can become life threatening (at which point, the costs could quadruple due to long term hospitalization and all that entails). It is important that you get treatment for your symptoms before that happens, especially now that you feel you are heading towards a flare.
At the same time, I understand your quandary regarding the prohibitive costs of medical care at this time. But, may I ask a very blunt question? Does your husband's treatments ward off a possible fatal event? Because your treatments would be doing just that! Does your family know that, without treatment, this disease has the potential to result in death? If not, that is something that you need to tell them so that the priorities can be re-arranged. If you find it difficult to tell them, print up some of the posts on these forums and let them read them so that they will understand.
It is important that you see a doctor so that you can have the tests, get the diagnosis, and start the treatment. This is not a virus or the flu that will eventually go away.. this is a chronic disease that will never go away and can potentially be fatal or, make you so debilitated that you are unable to function at all. It must not, and cannot, be ignored.
Your family needs some education about your illness and the jeopardy that you may be in if not treated! I wish you the very best, please try to find a way to get your medical care.

Peace and Blessings

04-06-2008, 12:38 AM
I know all about the hiding how bad things sometimes get from people around you, however someone has to know because if something goes wrong someone has to be able to know what to tell the doctor. I think you really need to find a way to see the rheumy. They can start you down a path that can keep you healthier. Eventually you can learn to know whats wrong and not necessairly visit a doctor every time, you can say its time to take a or b medicine.

04-06-2008, 06:53 PM
Teri, Saysusie has given you sound advice, and I hope you'll find the strength to take that advice. This is a disease that's full of surprises, and it's impossible to predict just what may be around the next corner. Delaying your care could might mean a bit of discomfort - or it could mean ending up in intensive care - or worse. None of us can control how others view our illness - even those who love us. I hope you can find a way to get your family to understand; to learn about what this disease is all about - but even if you don't, you still need to take care of yourself. Please stop by here whenever you need to vent or when you need advice. But, no one here can be a substitute for the care of a qualified doctor - please get to the doctor and let us know how you're doing. We'll all be sending good thoughts your way. Believe me - we DO understand!


04-07-2008, 05:56 PM
I don't have much advice, teressaa40, but I just wanted to give you a cyber hug. I am very sorry you are in that situation, and I really hope that somehow you can go get a diagnosis and treatment and be able to feel better. I will send up a prayer for you.