Need some love from my fellow Weggies (& advice!)

[annekat]

There is a list of special conditions somewhere on the Medicare site, and vasculitis is one of them, that make one more likely to get benefits. But it is not a for sure thing, they still look at individual cases and can deny or approve. But I do remember end stage renal disease as being in a class by itself, and benefits are pretty much automatic for that regardless of age, or at least that's the impression I got. If you have the 90-day waiting period, or otherwise were sick enough for benefits at some defined point in the past, you will get retroactive benefits if approved, as a lump sum, as part of the deal. The Social Security and Medicare sites are so convoluted, unless they have improved, that it makes me tired just to think about looking for that information again.

[sangell]

I hear you Annekat. The insurance and medical industry is so complex does anyone really understand it? How a person with a serious illness can be expected to keep on top of the financial aspects of their treatment while coping with the lifestyle changes their disease is causing is sadistic. At the very least insurers need to consolidate hospital, doctors and laboratory fees into a single statement ( like a credit card company does) rather than have your mail box stuffed with bills from people and companies one has never heard of or have not idea what service the allegedly performed. Instead I get a blizzard of mail from Cigna saying they paid for this but not that and make me deal with it. For example, when I was delirious and on morphine after an unnecessary and botched catheter insertion when I presented myself on doctors orders to the ER, I was finally wheeled into surgery when the nurses could not stop my bladder bleeding. An out of network anesthesiologist was used and I got a bill for $7500! from her office. I couldn't understand why until her office said CIGNA had refused to pay because she was out of network. They instructed me to contact Cigna as they were not allowed to appeal only the insured patient could. Its mind boggling. I'm all for patients trying to keep costs down but people cannot be expected to 'shop around' for the best deal when they are sick or are being wheeled into the operating room for emergency surgery!

[drz]

It seems to me that every year they make changes designed to curtail what they they will cover. For the past few years I have had to spend hours at the beginning of the year to get the meds and medical supplies I need to maintain my health. The changes this year required me to make two dozen phone calls to get two meds covered that had been covered for past years before. This is all done in name of cutting costs by Medicare and insurance companies usually follow their lead.

It saves the insurers some money in the short term because many patients are unable or unwilling to spend the many hours on the phone to hassle their physicians to do the extra paperwork needed to get their expenses covered. In the long run it ends up costing them a lot more because people don't get the medical care they need to avoid bigger problems later which cost the insurers a lot more. Like the old saw, they are penny wise and pound foolish.

[Alias]

You might look in your community for whatever organization offers consultation with Healthcare Navigators. Sometimes it is a non-profit like United Way. These people are trained to guide you through the insurance maze to determine your best options. The position was created was created by the Affordable Care Act, and the service is free.

[jlove]

Thank you all for your advice! I have to look more into Obamacare and Healthcare Navigators. I think, as you said Anne, it's time for me to leave my current job. I'm thinking about jobs where I could work from home and still be full-time with benefits. I have some project management and event planning experience from my current job and switching to an area more focused in what I enjoy could be very helpful. Then I could supplement my income with writing and try to work on building up a portfolio and a website in the mean time. I feel as though I don't have enough time in the day to do everything I need to do and I'm especially tired right now. I think my Wegs fatigue is really taking over now that I have additional things to worry about. I have been taking melatonin but I still have had some difficulty falling asleep at night.

Maybe, I'm just really overwhelmed. I feel like I'm not really keeping my head above water right now and I need more time for myself. If I could secure another full time job and take some time off before starting up my next job, it would give me a break. I guess I'm not 100% sure what I need right now but I can say for sure that I am overwhelmed and emotional. My brother, who is in his second to last semester of college, will be living at the house over the summer as well. I think being around him and my Dad will be helpful because we can all be together and I won't have to worry as much from afar. My current job is located right next to the hospital I visit so often to take care of my Wegener's and it's the last place I saw my mom alive. I think I really need to get away from anything medical in my job. Medical issues have played far too large a part in my life thus far and I'm at a point where I would rather take a huge pay cut and be a camp counselor than continuing managing research grants for physicians. I need to be away from it.

I know the insurance is important but I feel like I want to make my happiness more of a priority. I have a hard time concentrating on things besides creating happiness and mourning my mom. Thank you all for offering your condolences and advice. I know taking care of my Wegs is a priority but I just have to do some complaining about how its another thing I need to balance in my already burdened mind.

[annekat]

I'm glad you unloaded all those feelings, jlove. That's what we are here for. Being with your dad and brother over the summer sounds like a good thing. I can understand your wanting to leave a job involving medical issues, and can also understand your indecisiveness. It sounds like you have a lot of good qualifications for eventually having a job with benefits that you can do from home, or that is at least in a different field where you can use the same skills. It is so true that Wegs takes a lot out of us at the same time as we are dealing with life events, losses, and decisions about moving forward. I guess I can use the old AA mottoes, 'one day at a time' and 'take it easy'. Not that I really think AA invented those sayings, but they've made good use of them. They apply to everyone, really, and I need to think of them more often, too. Best of luck in embarking on a plan.

[zizzcat]

I'd be very cautious about losing your private healthcare. Don't know your age or the plan you have from work but if you work at a med school I don't imagine it is a bare bones policy. There is COBRA that allows you to keep an employer provided policy for, I believe, 18 months but you have to pay the entire cost. In my case I had retired from a municipal utility job ( at age 58) and the city is paying about $1000 per month while I contribute $340. Its from CIGNA and if not a 'Cadillac' policy it is better than Obamacare policies with their deductibles. Still, with renal failure and dialysis part of my life since November, my costs have been substantial. Fortunately, after a 90 day 'waiting period' you become eligible for medicare ( I'm not yet 65) if you have renal failure and Medicare and Cigna now o share the cost of dialysis which I suspect are enormous but it doesn't appear to cover things unrelated to Wegeners. At least some doctors and hospital billing clerks seem to think so. Whether this special Medicare 'exemption' for kidney failure applies to other Wegener related conditions might be something to look into.

I I also am sorry for your loss. I hope you find some comfort in the memories you have of her.

As far as health insurance I would recommend looking into Obama-care. SSDI is a good long term goal. You would probably be approved but it might take up to a year and it takes an additional year to get Medicare. My husband recently got SSDI. During the period of his application he had to prove that he was unemployable, which he did by loosing 11 jobs in a row.

Sometimes there are clinics which offer medical care for free or on a sliding fee basis. I did not have very good experiences with them because immune diseases were too complicated for them but they were better than no medical help at all.

i wish you the best.