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

[jlove]

Two weeks before my 26th birthday (which was about 2 weeks ago), my mom passed away from her battle with cancer. She told me about her cancer (of the lung) almost exactly a year before the day she died. It was Stage 3 and serious but she was tolerating her treatment fairly well. Her cancer didn't seem to be spreading but it wasn't going away either. She passed away in her sleep and we think it was likely a blood clot in her lung that caused her sudden death. I had about a year to come to terms with her being sick and I thought I knew what I was in for. I thought we would have more time. I told myself I knew she could die but I don't think I ever really believed it. I wish I did so many things differently in the last year of her life. She really was my best friend and I wish I had done a better job of being there for her. It was so hard to see her suffering and I think she was very afraid. At least, with her passing suddenly, it probably minimized the pain and anguish she had to feel in her life. I'm grateful for that but I miss her so much and I am trying not to focus on my regrets. She was such a huge part of my life and she was my biggest fan, best confidant, and the rock in my life when it came to my health problems. She spent countless hours researching autoimmune illnesses when I was first showing my strange symptoms in high school. She would quote studies to my doctors or test out theories with them. She talked me through the emotional aspects of my illness and paid extra money for me to get my hair done when I was 17 and was feeling down about prednisone's moon face, acne, and weight gain. She probably read this forum because I know she knew about it and I know she donated money to it at some point. She is the greatest woman I've ever known and my world feels completely different without her. To say I'm devastated is really an understatement. It's been a month already and I still feel like I'm moving in slow motion.

All that said, between this and my Wegeners, I don't think I can continue with my full time job. I work in a grants administration office in a medical school and I was thinking about leaving in the past year already. I really want to focus on careers in writing (of any kind, I just love to write) and I have been having trouble finding full time jobs in those areas. It seems a lot of people start with contract work and part time work to build experience and then transition into full time roles. What I want most right now is to move back to my parent's house and live there for awhile, the plan right now is to stay there for a year and see where I'm at next summer. I can help my dad maintain their large house and go through some of my mom's things and, in exchange, he wouldn't charge me rent. So, I think now is the best time for me to try doing contract and part time writing work to build up experience in the field I really want to work in. My only problem with this is I would likely need to buy my own health insurance. I'm hoping some of you can provide advice about self-employment or buying your own health insurance. Has anyone done this? Has it provided any obstacles for you in terms of maintaining high quality health care? I am in the U.S. so I'm particularly interested in those of you who live in America. I know healthcare can vary greatly between countries. I'm a little scared about making this leap but I think it's both what I need and what I want right now. As you all know, however, it's very important for the chronically ill to have good health insurance. The main hurdle I see at this point is being disappointed in the health care options available for me if I choose to go this route. Please let me know if you have any advice! (or know of any writing contract jobs :) )

[Pete]

Hello jlove,

I'm sorry to hear about your Mom. You'll never forget her. Sometimes, you'll find yourself sounding just like her - and not know whether to laugh or cry. Be thankful for her guidance and example. Don't beat yourself up about what you coulda/shoulda done. You can't change that.

I applaud your desire to get into writing. There will be challenges. You'll persevere your way through them. In the meantime, as you seek a career in writing - start writing! My son did a blog about Porsches, stick shifts, and fun automotive experiences. He was doing fine until baby #3 appeared. As a stay at home dad, he has his hands full (All three kids are under 5.)

As for health insurance, you might want to look into Obamacare. You may qualify for a subsidy that would make health insurance more affordable. You can get coverage. The question is how much it will cost.

Hope you progress well with your plan and that wegs leaves you alone. Good luck!!!

[annekat]

Dear jlove, please accept my condolences on the loss of your wonderful mom. It sounds to me like you are handling it about as well as anyone would. It is just never easy. I agree with Pete that you should not beat yourself up over what you could have done. These are all normal reactions, though. I think moving in with your dad and helping him with taking care of his house, and your mom's things, sounds like a very good idea. I'm not totally clear on whether this would mean quitting your job, but if so, maybe it is time. You are obviously a good writer and those skills are marketable, I think, and such jobs could be done from home. Having no rent for awhile would be a plus.

As for health insurance, I'm on Medicare because I'm on SS disability, due to Wegeners, and I had no trouble getting this, and was likely helped by my age, 58 at the time and 63 now. My premium for Original Medicare, with parts A and B, is a little over $100 a month, and it is taken out of my benefit payment. There are more expensive Medicare plans with more coverage and out of pocket limits.My Part D drug plan is $33.50 a month, with no deductible. I have no other insurance, but when I turn 65 will be eligible for some supplemental plans that I am not now. From what I've read on here, disability benefits are harder to get at a younger age. But with your work record, you might be qualified for a better amount than some, due to having paid more into the system, if you could qualify.

If I was in your position, I would probably follow Pete's suggestion and look into the Affordable Care Act (Obamacare). If you are not working, or only minimally, I'd think you'd qualify for a low premium. But I don't really know how it works.

Best wishes to you and your dad and any other family members and friends, in coming to terms with your mom's passing and finding support, comfort, and eventually peace. I know you will all be there for each other.

[vdub]

If you want to write on a contract basis, i think I sould contact Marta for some advice. Marta is an old time forum member and has written articles as well as a blog. Not to mention she is a great gal. She lives in Jasper, BC and runs a B&B. Writing is just a side line, but I'm sure she'd like to point you in the right (write?) direction. Just PM "marta".

[renidrag]

Sorry for the loss of your Mother. Take time to remember the good times and gradually a smile will cross your face daily. Perhaps you could file for SSDI benefits due to WG. I was able to get it at 61 and as Anne said I have medicare taken out monthly automatically. It would be worth a shot and fill the financial gap and you can always go off of it if you are making money again. Best to you,
Dale

[Alysia]

Dear Jlove. I am so sorry for the lost of your mother. I believe that the soul continues to exist after death, in the presence of God. I know that. Since he passed on Oct 2, 2014, my beautiful Phil gives me many proofs that his pure soul is very alive. I talk to him a lot in my heart and many times he gives me an answer. Like asking him a question, going to sleep and then in my sleep he comes for a visit and telling me the answer. An answer that I could have never find out in any other way. He also sends me some gifts of his sweet eternal love from time to time.
So look around you, talk to your mother in your heart, tell her whatever you feel like, reconcile with her, ask her to visit you in your dreams, to protect you, to guide you, to tell you about her love for you. Be attentive to her answers. And let her love embrace you all days.

[annekat]

Another forum member who has done contract writing is Carrie22. Like Marta, she doesn't post here as often as she used to, but is a nice person, and I'm sure wouldn't mind getting a PM from you about the subject.

[Jaha]

I am so sorry that you lost your Mother recently. As others here have pointed out, don't beat yourself up about what you should have done. I went thru those thoughts when my Father passed away, I think that those are normal feelings. I think you moving in with you Dad is probably good for you and him.
Have you checked with the college that you currently work at, to see if there might be contracted writers in some of the departments at the school? I am wishing you all the best with your future plans. Take care

[drz]

Our area has local writers groups that meet to discuss their writing and to offer supportive help to each other. Some have got their work published. Is there any group like that in your area?

[sangell]

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.

[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. :hug2:

[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.