At My Wit's End

General
1

I hope this post is not too negative, though I’ve been feeling depressed recently, which is nothing like my personality or disposition at all.

I may be about to lose my job due to all the work I’ve been missing. I stay sick and in pain most of the time, and I work as hard as I can to keep up with my responsibilities, yet I keep failing. My job understands and they say they don’t want to fire me, but may have to.

With the doctor, I am still waiting on a diagnosis so that I can start getting treatment. So I have nothing to make me better except meloxicam for arthritis, and it doesn’t seem to help much.

I am 25 and married and my husband and I both work in a call center that offers health insurance that is a complete joke so right now I don’t have any, since I have always paid less without insurance than I do with their sorry insurance. We don’t make much money either, so trying to afford all of these tests and doctors appointments is a nightmare. We are tryin to finish college degrees, basically trying to follow our passions and get profitable careers as well… And we are one semester away from graduating with bachelors degrees but we may both have to quit for financial reasons. It’s a little heartbreaking.

I thought with the affordable care act I would be able to get insurance that was worth paying for, however even though our income is in the right range we can’t get any help with premiums so the coverage we need is as much as our monthly rent, and we can’t afford it. Obviously we are in a state that didn’t expand Medicare and we don’t qualify for any state programs.

So if my health doesn’t improve very soon I won’t be able to work. Obviously we can’t make it on one income, especially if our health insurance premiums are as much as our rent. Basically we would have to both quit school (for now at least) and hope and pray he can get a good enough job elsewhere to support us both and pay all my medical bills and high premiums.

I feel guilty to put that burden on him, I feel powerless since I can’t do anything to help the situation, and frankly I feel stupid for going back to college instead of just realizing that ship had sailed and getting a good enough job to have decent insurance and be financially stable.

I feel like I can’t talk about any of this to anyone besides my husband who is right in the financial struggle with me. I try to talk to family or close friends and their yes just gloss over like there’s a marquee scrolling on their forehead “OMG Don’t care don’t care omg”…

I have no idea what to do. I’m so exhausted I can’t take action. I just have to rely on the husband to take care of stuff, and he is so much better at waiting than I am. I am a “get it done now” person. It drives me nuts not to be able to get things done myself. I have no idea what we are going to do.

Any tips for dealing with this sort of thing? I’m just lost without a lot of outside support.

2

Lulu,

I totally get where you're coming from. The financial strain being sick puts on us is such a huge burden, almost as bad as being sick itself. I don't have any tips for sorting through this, as I'm pretty much in the same boat. I'm not one to discourage anyone from doing what they want, but if worse comes to worse, you may have to put school on the back burner. I'm sorry for saying that. I think most of us have had to postpone things for the sake of our health or pocketbooks. I can tell you're very overwhelmed right now. All I can say is, try not to worry too much about what hasn't happened yet. (I know much easier said than done ((hugs))) Try to rest as much as possible. Sometimes when we haven't rested well, it makes our anxiety build to that point where we can't think straight. It's not like I've got it all figured out, trust me. I'm trying to take my own advice most of the time. Just know we get it, and are here for you.

-rosie

3

Lulu, do you have short term disability? I am guessing you don't since you didn't take out the health insurance either. Can your husband take out medical insurance and have you on his coverage? Probably not I am guessing. I have been out of the work force too long for answers but I know there are a few people on here that will have some ideas, I am sure.

Good luck and prayers for you. Gentle hugs. Reet

4

Hi

If he's so close to getting his degree he needs to do everything in his power to finish school. In Some states you can stay on parents insuranc til 26. Maybe you can check on that??? I don't know the law now bu t years ago youcouldnot be fired because you were sick.

I think family and friends are just frustrated .

Cindy

5

My suggestion would be to allow them to fire you, draw unemployment, apply for disability, finish school while on unemployment, maybe live with a family member if possible during this time, check to see what health insurance exists through your school ( My school had great plans that you could utilize while you were in school and for a year or two after graduation), check into state and federal health plans, and pursue a diagnosis. I know this sounds monumental but it really just involves getting on the computer and searching out resources. There may be charities in the area who can help also. I’ve been in your shoes and was able to get low cost insurance through my college, state disability, and I found research programs to participate in for medication. Also your doctor needs to know that lupus is now diagnosed through symptoms not just lab work. You have to have a certain number of the symptoms with the butterfly rash as one of them to be diagnosed. I have multiple autoimmune issues that took almost 15 years to show up in lab work. Sjogren’s was the only one that came up positive. Hang in there and if you need to chat, message me. Good luck.

6

Lulu, I’m so sorry you have to be going thru all this, and if it helps, so many of us have been or are going thru similar experiences - I did. I got sick & lost a job I loved, had a kid with health problems to support, and had to go without insurance for the first two years I was sick, until my husband got a job with insurance and I won my SSDI case and eventually got Medicare thru it.

I think the advice to get as much rest as you can, and try not to let yourself get overwhelmed is very good. Is there any possibility you could seek out counseling through your community mental health agencies, and see a therapist once in a while, to help you make it thru this crisis period? It would give you a safe place to vent, help you from feeling so alone and unsupported. A good therapist - particularly a Licenced Clinical Social Worker - might know of resources or tools to help you deal with all this that you might not be aware of. My old therapist used to say that a good therapist was the one with the map and flashlight, there to help you when you’re lost in the woods: they don’t tell you where you should go, but they help you figure it out, and help you reach your destination. It’s worked for me over the years, more than once.

Another thing I’d advise is to at least look into SSDI, if you think you’re approaching the point where you can no longer work or will be laid off. And - very importantly- start NOW documenting everything relating to your health and how it’s affecting your work, going back til it began, if you have records. Filing and succeeding with an SSDI case is largely about having good documentation of how sick you really are, how hard you tried to work despite it, how hard you’ve tried to get treatment, and how well you’ve complied with treatment. Even if you aren’t ready to do it now, if you think you might someday need to, start documenting all that stuff, and when & if that day comes it will be that much easier.

Is there possibly a lupus support group in your area? If so, I’d also seek them out immediately - they could know about resources for you, plus it would be a support system of friends who totally understand what you are going though. Online friends are wonderful, and I wouldn’t trade mine for anything, but there’s no substitute for having someone local that you can call when you’re feeling freaked out or just need a warm hug, a chat, and a cup of tea!!!

The last thing I’d say may sound a little trite, but please hang in there. I thought my world was coming to a total end, and it was one of the most difficult times I’ve ever been thru. But things do eventually work out, if you can just hang on: you DO get thru it somehow, and eventually things get better. Big hugs!!!

7

Lulu, please write to us here as much as you want/need! That’s what we’re all here for, and even if it’s not for advice (this is a support group, not a Q & A :wink: )



As far as insurance, when obsmscare starts (and maybe already), your parents’ plan will have to cover you (unless there’s something about being married.)as far as school,remember the work you’ve completed still counts and if you can get things stable again you can finish it later. See about a leave if absence so you wouldn’t have to re-apply.



So sorry to hear you’re going through all of these immense pressures! And remember it’s ok to feel (and healthy to express!) the way you feel. These are hard things! Seriously, write here whoever you need to, and try to remember to during the hardest times.



Brynn

8

Just wanted to send some, supportive energy your way. I am, in some ways, in your shoes, as are many of us on here. You are not alone. I have been sick for about eight years. It took five years to get a diagnosis and treatment. I am lucky in that I have insurance, but unlucky in that I’m single. My family lives close, but only my daughter understands. She tries to help but she has two kids and a full time job. Her husband’s in school. So I try not to ask for much help, but it’s hard trying to work full time when I’m sick. Have you asked for a reasonable accomodation at work? Perhaps you could cut your hours instead? Just a thought. I am also likely going to have to ask for a medical retirement from my job. It feels really scary but it may be the best option for me at this point. My mantra is “less stress, more rest.” Easy to say, but hard to do.

9

First, a state doesn't administer medicare, the US government does. Are you referring to medicaid? All states have it. Persue it. Some state have it and are very cagey about it. Find a resource.

You should be able to set up an FSA account (pre-tax that comes right off your gross income). There is care for you.

Anne Marie and heliongoddess have some great suggestions.

You have to hold on.

10

want to thank everyone for their replies.

@nates_tired_mom / Rosie

I know I may have to put school on the back burner. I'm actually completely over it when it comes to myself. I just feel sad if my husband doesn't get to finish. Then I also feel like his family will hold it against me if he has to quit school for me, but I guess that doesn't really matter too much. When it comes down to it, we've got each other and that's the important thing. If anyone can't understand that money right now is more important than a college degree just doesn't get it.

@reet

Thanks for the suggestions. Unfortunately none of them apply to us. My husband and I work at the same place that offers awful insurance, and we didn't take out any of it. I never thought anything like this or anything else would apply to me.

@Freightliner / Cindy

Thanks for the support and suggestion. My husband is over 26 and I am about to turn 26. Regardless, my parents wouldn't put me on their insurance if they could. I guess now that it's so important they might if I paid them for it every month (they have to pay for dependents), but I guess it's irrelevant with my 26th birthday in less than a month.

I'm actually closer to graduating than he is, but it's more important to me that he graduates than that I do. We have already made a lot of sacrifices to finish, but if we can't make ends meet while staying in school, I'm not sure what else to do.

@

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@Annemarie

Your advice is very interesting, and something I hadn't thought of. I thought it would be best if I quit before I got fired, so that if my Dr. gets me on meds that make me feel good enough to work like I used to, I can go back. If I get fired, they probably won't hire me back. Then again if things get awful and I end up needing disability, it might look better if I tried until they wouldn't let me try anymore. I'm hoping for the first option.

I had a friend who got fired and received unemployment, but it was so little that it hardly made a difference. I don't know how amounts are determined, but I already work part time so I doubt it would be much if I were eligible. As far as living with a family member, I'm already there. We pay half the bills and half the mortgage, which is considerably less than a one bedroom apartment would cost us. We don't have family that would let us live with them under different circumstances, and we're too proud to ask them to. I'm so tired of needing help. It's been like this or too long. We want to be on our own again.

@helliongoddess

Thanks for your understanding. A lot of the things people are saying make me think I need to move out of Oklahoma, especially the small town I am in. I know I can go to counseling through my college as long as I'm in classes currently, but classes just ended. Before, it seemed like too much trouble. When I'm not missing school and work, I am busy all day and all evening til I go to bed. I hope what I'm about to say doesn't sound insensitive, but it's the reality of the situation. If you get counseling through the state, the only thing available to you is group therapy, which is almost entirely made up of people who have to be there by law. Even though it's probably mostly substance abuse charges, it always kind of scared me to think of going to group therapy with criminals and drug addicts. I'm sorry for saying it, but... that's how I feel.

I didn't think of getting insurance through the school. I don't really know who to call or ask about it at the school because they don't advertise it. I guess I will ask around and see if it might be a possibility. It always looked so expensive in the past.

I don't feel like I'm to the point of SSDI yet, but thanks for the tips. The problem now is that I have absolutely NO treatment because I don't have an official diagnosis... which means, yes, it may be something besides lupus making me so ill, but I seek support for lupus because it's the only thing that explains all of my symptoms, unless I have several different illnesses. I keep thinking if I just get the right medications I'll be functioning again... maybe not like everyone else, but functioning enough to work. It's a waiting game for me right now.

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@Faldora / Brynn

Thank you for your understanding. It is so nice to have an outlet where people understand what I'm going through. I don't have many of those in my life. I feel like really you can't have this much going on with you physically and never get sad or angry or need to vent.

As far as the "Affordable" Care Act goes, I've been very disappointed. I think I mentioned in a previous comment why I can't be on my parents' insurance. Unfortunately that ship sailed. I've ended up ineligible for any possible assistance unless I move to another state with fewer stipulations on medicaid or unless my appeal goes through for my husband and I to get a tax credit toward purchasing health insurance through the marketplace. We should be able to get it for like $140-$210 a month with low deductibles, except that we're not.

@heymj

Thanks for understanding, and I am sorry to hear about your struggles. I'm glad you have someone close by who understands, even if she isn't able to help as much as I'm sure she wishes she could. My manager did suggest cutting my hours. They are pretty understanding and don't seem to want to fire me. It probably helps that I'm fabulous at my job when I'm able to be there, lol... I suppose cutting hours would be better than quitting. I just feel like I never know when I'm going to feel good and when I'm going to be sick.

I can't believe you were sick for so long before a diagnosis. I'm sorry to hear that. I've had various issues for about 10 years now (following a relapse/remitting pattern) but it's never been too serious. My doctor said if I had lupus for 10 years and no treatment I'd be on dialysis by now. Honestly I don't care what they want to call it as long as they can make me better :-S

Take Care and see you around the boards :)

@USAGURL

Yeah, I meant Medicaid. I always say the wrong one. In OK it's called "SoonerCare" and they have somewhat strict guidelines. I've tried a few times. For me, they will only pay for family planning services because I don't have kids. If I had kids they'd cover me. They want to keep me from having kids. Sounds like they really don't want to cover me... haha... I was recently told in Texas, it's strictly income based. Too bad I can't afford to move, lol.

13

Do you have a friend that's a social worker. Social workers have knowledge about resources both in the community and programs like Obama-Care (no matter how complicated). The best thing about the national health act is that everyone has access to health care. Or, you just need to keep on researching. If your work or your husband's provides crappy health care, it probably doesn't meet the standards of the National Health Care Act. Keep on pushing. Make the agencies send you the qualifications. Just, keep pushing.

Lulu said:

@Faldora / Brynn

Thank you for your understanding. It is so nice to have an outlet where people understand what I'm going through. I don't have many of those in my life. I feel like really you can't have this much going on with you physically and never get sad or angry or need to vent.

As far as the "Affordable" Care Act goes, I've been very disappointed. I think I mentioned in a previous comment why I can't be on my parents' insurance. Unfortunately that ship sailed. I've ended up ineligible for any possible assistance unless I move to another state with fewer stipulations on medicaid or unless my appeal goes through for my husband and I to get a tax credit toward purchasing health insurance through the marketplace. We should be able to get it for like $140-$210 a month with low deductibles, except that we're not.

@heymj

Thanks for understanding, and I am sorry to hear about your struggles. I'm glad you have someone close by who understands, even if she isn't able to help as much as I'm sure she wishes she could. My manager did suggest cutting my hours. They are pretty understanding and don't seem to want to fire me. It probably helps that I'm fabulous at my job when I'm able to be there, lol... I suppose cutting hours would be better than quitting. I just feel like I never know when I'm going to feel good and when I'm going to be sick.

I can't believe you were sick for so long before a diagnosis. I'm sorry to hear that. I've had various issues for about 10 years now (following a relapse/remitting pattern) but it's never been too serious. My doctor said if I had lupus for 10 years and no treatment I'd be on dialysis by now. Honestly I don't care what they want to call it as long as they can make me better :-S

Take Care and see you around the boards :)

@USAGURL

Yeah, I meant Medicaid. I always say the wrong one. In OK it's called "SoonerCare" and they have somewhat strict guidelines. I've tried a few times. For me, they will only pay for family planning services because I don't have kids. If I had kids they'd cover me. They want to keep me from having kids. Sounds like they really don't want to cover me... haha... I was recently told in Texas, it's strictly income based. Too bad I can't afford to move, lol.

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Hi!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! slow down for a moment? Keep seeing the doctor and explain your situation to him /her, they should be able to help you!! Go apply for social security dissability and get your doctor to fill out and evaluation sheet and take that with you (when or if you do decide to go ) - that helped me . It is not easy , i know i was you at one point of time , my job had to let me go , i was a waitress and standing / holding things just was not happening for neither of us in the long run that i tried to fake it! Only you and your husband can answer this . I've never been married , but i can relate with your problem . Sometimes things happen for the best and who wants to be on the side line ? Just hold on and don't over whelm yourself ,process takes time , it is not going to happen overnite nor in the morning , so hold on and keep fight and voiceing that you need help , God will send it your way!!!! Best wishes ...Beverly L.