And the big news is…

26 11 2009

Thanks to being diagnosed with a disease, I was left with a big decision to make. And there was a deadline on this decision. I ignored the decision-making process at times, but often, I agonized and wallowed and over-thought the whole thing. But then, last week, the deadline was approaching faster than I could deal with, and I was forced to make up my mind once and for all. Except that I had a few days with 24 hours each, and each of those hours filled with 60 minutes, all made of 60 seconds, which gave me approximately  432,000 opportunities to change my mind.

Alas, Tuesday I decided to lock in my answer.

I had to let my boss know whether or not I’d be returning to work. After becoming sick, my executive director generously offered to pay me half, and let me have until Dec. 1 to stay home and figure out if I could come back. Not bad, considering I work for a non-profit, struggling its due economic downtime struggle.

My job is part-time; nonetheless, pretty intense. Sure, being a surgeon or an air traffic controller probably beats my job in the intensity department, but still, My job entails dealing with 120 children, and their paying families, and 3 very artistic and strong and independent directors, and the staff of every venue we visit, and more record-keeping and phone-calling and attention-paying to every frip-frappin detail than you can imagine. Usually, if there’s a problem, ANY problem, it comes to me. Most often so I can take the blame and fix it, or at least so I can fix it for whomever IS actually to blame. If there’s a question from anyone, to anyone, I’m supposed to know how to answer it. There are parts of the job I love, and parts I really hate. But that’s any job, from what I hear.

So, in making the decision of whether or not to return, I had to weigh the following:

1. We’re dirt broke. And about to get dirtier, since Eric’s store closes next month, and he so far has not found a new job.

2. I’m still pretty sick, and on drugs.

3. We’re dirt broke.

4. Stress is a trigger for porphyria, and my job has enough stress for several people to share, but

3. being dirt broke is also very stressful.

4. The building where our offices and rehearsal spaces are located is toxic to me. In a bad, bad way. Full of mold, and full of horrible harsh cleansers that are used several times a day on every imaginable surface, and full of those evil little air fresheners that see you coming and spit foul-smelling poison on you as you walk by. My organization rents the space and has no control over what cleaning agents are or are not used. I literally came home feeling sick every night after being there last year.

5. I work around children, who are known for their ability to walk through their daily activities carrying life-threatening viral and/or bacterial infections inside their nostrils, and distributing them to any lucky soul who happens to come within a few yards of them. And, of course, illness is a porph trigger.

6. I could also NOT work and STILL get sick, like, in the unemployment line.

7. Staying at home all day every day is terribly boring and mind-numbing to me.

8. I like my organization, and they’ve had a hard time with turnover in my position, and I’ve looked forward to being the one to stick around for a while.

9. However, never knowing when, where, how or why I could end up really sick and in the hospital doesn’t help THEM out much, in terms employee stability. Especially since one of the early onset symptoms of an attack can be forgetfulness and confusion. Which did happen last time, leading me to screw up simple assignments, leading my boss to lose her shit, leading me to feel more stressed out, which brought on, well… you know.

10. We’re so up the creek in terms of money, and I mean it.  Have I made that point?

11. However, I have to believe that, in the words of one of my wiser friend’s very wise husband, “Everything will always eventually be OK.”

So Tuesday I lunched with my boss, and let her know the verdict.

I will not be returning to work.

Eric and I have decided that it’s not worth risking my health. If the job was in a different, less poisonous location, then MAYBE I could try it, but that doesn’t take away the stress, which could send me to the moon at any point, nor does it have any baring on me being exposed to a trigger outside of work, leading to an attack, which could knock be out again. I hate having to quit, but for my health, and for the well-being of the organization, I really think it is the best thing to do.

So now my new exciting mission in life is to start the process of filing for Social Security Disability. All of my doctors have encouraged me to do so, and have said they’ll provide whatever documentation is necessary. So I know I’m legitimately in need of it, but I can’t help but feel a little loser-ish. I mean, it’s not like I’ve thrown my back and can’t stand on my feet for more than 20 seconds, or like I lost an arm in a machine at the factory, or the explosion in the lab left me blind. Some days I feel completely normal and healthy, and I hope to have more and more of those days in the future. But the reality is, I never know when it could strike again, and knocking out extraneous exposure to triggers is crucial, as every time I have an attack, there is potential for more permanent nerve damage, or for the severity of the attacks to increase, leading to paralysis, especially respiratory (read: not being able to breathe,) or so I hear.

And maybe in a year or two I’ll feel more in control and I’ll be able to hold down a job, but for now, I don’t feel in control at all. I’m still on a good deal of morphine, and still puke if I look at the wrong food sometimes. I’m also having nerve pain issues more these days, especially in my face. Which Eric enjoys, because every time I say my face is hurting, he gets to say “Yeah? It’s killing me!” Ha.

So, maybe we’ll be really poor, but truthfully, we’d probably be poorer if I went back to work, thanks to the medical bills I’d wrack up.

At least this year, neither Eric nor I will be working on Christmas.

Oh, what have I done. Sigh.





9 responses

27 11 2009
Marmite Breath

I think it sounds like a good decision to me. And God knows, that was a hard decision to make.


27 11 2009

Being poor is definitely better than being sick. And pretty soon you’ll have this porphyria thing under control and can venture out again. Can’t wait to do some frugal hanging out in only 2 weeks!!!

27 11 2009

Oh, and that is a very wise friend’s husband.

27 11 2009

The wisest of the wise. I’m getting lots of support here and on FB and in my inbox from everyone on this, so I’m feeling better… We’ll just see if you all still think it such a great idea when I’m begging for money in about a month!

29 11 2009

As a fellow porphyria sufferer I had to go on disability in my late 40’s. it was a hard decision. A couple of things to remember when applying the average wait is 18 to 36 months before receiving benefits. Almost everyone is turned down on their first try. You can go for back pay but only to the point of when your illness occured. Medicare is not available until 2 years and 5 months after approval ie the first 5 months of benefits including pay is written off. if you are in a desperate situation i would apply for disability but I would also apply for SSI which is supplemental income and includes getting on medicaid which would be available immediately. if your husband gets unemployment you may have too much income. I have met you in the porph group on the web and i feel your pain in making the decision. The government will pick up 70% of your cobra for 9 months making it affordable. Please do this as we cannot be without insurance. If you have continuous coverage under HIPPA preexisting conditions are waived with new policies. Feel free to email me privately if you need help with the process.

30 11 2009

Thanks for the tips, Amy. It sounds like good times are ahead…. bleh.
I’d been told about getting denied the first time before, but I had no idea about it taking up to 3 years to start getting money! How on earth is one supposed to coast along for that long? And don’t I have to be officially jobless before I apply? My org. is still paying me 1/2 pay through the end of the year, so I have to wait until after that to apply, right? What is SSI all about? Is this something I can get separate from disability?
Ohmygosh. I already want to poke my eyeballs out. Luckily, my father-in-law is a lawyer who’s offered to help us wade through the process, and I feel lucky to have people like you, Amy, and several others who’ve done it before, who can help me figure it all out.
Ouch, huh?

1 12 2009

SSi is supplemental income depending on how broke you are people do collect both. I believe that you are allowed to amke up to 800 dollars a month while on disability. I would not file until your job is done they will see the income and deny you without ever looking at your case. I had a stack of charts that was literally 5 feet tall and I was turned dwon they did not even bother to look at them in my opinion but wanted me to hire a lawyer and do the work for them. Then we found out my husbands company was sole and we had to move. Luckily I got an honest judge who called my lawyer and offered a settlement. It always takes 2 years and 5 mo nths from the date of disability to get medicare and I am assuming the date of your disability will be the start of your LOA. Amy

30 11 2009

Its always a hard decision. I have been through several high stress jobs, convincing myself that it will all be fine as long as I keep pretending I have no problems. In the end, it always turns out for the worst. Now, living in Asia, it’s catching up with me again, and I have just had my own contract terminated for being sick too often. So now I am looking at my options, too. I have come to the conclusion that full time work is something I just cannot sustain, so it looks like I will be working part time and poor forever! At least here in Vietnam you can cope quite nicely on part time work, so I am not too worried, but it’s not something I always wanted to do.

Bottom line is you have to think about your health. It’s the most important thing in life, cause if you don’t have your health, nothing else is really worth having.

Have faith. No matter what your faith is, know that it will all turn out ok in the end. I know ten years ago I thought the world was ending; now I am on an adventure in South East Asia, enjoying life in ways I never thought I would. Sure, I still get sick, but now I see that are so many other wonderful things in the world that sickness starts to take a backseat and I can truly live again. You will be the same! 🙂

Kate xx

30 11 2009

Wow, thanks Kate! I need these nuggets of positivity and reassurance right now. You’re my hero for living in Vietnam; I’m terrified to go anywhere for the time-being, for the fear of having an attack in an unknown place with emergency medical professionals who may not know anything about porphyria. I have my emergency binder put together, but still… I don’t have it in me right now to keep being a “first,” responsible for educating the medical world everywhere I go. At least my home-town ER knows what’s up!
Thanks for reading, and don’t hold back the advice!

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