chronic illness – Maria Deira writing, writing, lupus fighting Thu, 13 Apr 2017 17:08:17 +0000 en-US hourly 1 42086538 This [Past] Week’s Five Things Sun, 14 Jul 2013 03:13:03 +0000 Read more

So. This is a week late. Five things I like, which I meant to share last week. Here ya go!

1. This bit on The Secret by Dave Chappelle. Every person with depression or another chronic illness agrees.

2. Last weekend, I had the great luck to play Game & Wario. I haven’t laughed so hard in a while. If you haven’t played any Wario Ware games before, it’s a series of Nintendo games in which Wario has taken over. His minions create a variety of mini-games, which you can play individually or with multiple players. The games, the art work, the pace, and music are crazy, fast-paced, and so much fun. It’s too bad game reviewers like to hate on Nintendo and can’t decide if this like this game or not. Just admit it! It’s fun! And fun is good!

Here's one of the minigames, Shutter. Different scenarios, five different characters you need to find and take a photo of in 3 minutes.

Here’s one of the minigames, Shutter. Different scenarios, five different characters you need to find and take a photo of in 3 minutes.

3. Doctors who help. I have some really great doctors. I’d be dead without them!

4. Mild temperatures. Not too hot, not too cold. I can wear a lightweight cardigan or blazer, no socks, while walking around feeling cool and comfortable. Huh. I think I just described Sonny Crockett.

5. Star Trek Voyager. B’elanna Torres! Be my friend! Haha.

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Dorothy Zbornak: Vulnerable Bad Ass Fibromite Fri, 22 Feb 2013 08:51:51 +0000 Read more

It’s strange how the Golden Girls helps me get through tough times with its humor and honesty. I especially appreciate Dorothy — her sarcasm, values, and height. What a great character! I felt like telling a certain doctor this today:

I don’t know where you doctors lose your humanity, but you lose it. You know, if all of you at the beginning of your careers could get very sick and very scared for a while, you’d probably learn more from that than from anything else. You better start listening to your patients. They need to be heard. They need caring. They need compassion. They need attending to. You know, someday, Doctor Budd, you’re going to be on the other side of the table — and, as angry as I am and as angry as I always will be, I still wish you a better doctor than you were to me.

-Dorothy Zbornak, Golden Girls Episode “Sick and Tired Part 2”

Amen, Zbornak!

Work & House & House & Work Thu, 23 Aug 2012 15:31:27 +0000 Read more

The last time I updated about my personal life, I was quite upset with my insurance company, among other things, and how they did not approve a medication I desperately needed. A month later, they finally decided to approve the medication, which three specialists agreed I needed to take. It ultimately took a letter from the third specialist stating that if I didn’t receive the medication, I would most likely end up in the hospital (true) and then the insurance company would have to pay a lot more than $670/mo.

Once my prescription was filled and paid for, I made a claim to have the $700 (less any copays) refunded. My argument was that they had paid for the four refills prior to denying me coverage and that after a month of trying they approved coverage through December, thus they should have paid for May as well. A month after my request, I received a check for $670. Hooray.

In early July, I began feeling well enough to start really missing my job. I put in a request to return to work, got my doctor’s letter ready, and on June 30th I was back! This is the middle of my fourth week. The first two weeks went great but by the end of third week, the fatigue worsened. My garden, the house, painting, and my writing & art have all been set aside so that I can rest after work. And this is with only working part-time!

This past weekend I finally cleaned the whole house, which felt good but frustrating. I had started painting the entryway in late June but still have the trim & stairway to paint. I don’t want to fall into the rut again of only focusing on making it to work, keeping up the house, and having no life or no fun. This week has been better than last, but I’m still tired, a bit sad, and definitely irritable. I think I hide it well at work. I do worry about having to take another leave or, worse, not be able to work at all, getting in debt, making life tough for my partner and me, losing everything, becoming a bag lady. ;) Of course, I shouldn’t think like that. So far, so okay — ha.

This weekend my goal includes researching for my novel, reading a couple of novels, painting the entryway trim, and returning to work on the garden. I also need to really get back into a strict schedule of sleeping & waking, eating, taking my meds, and resting. I’m also looking forward to planting fall crocus in September.

As long as I remind myself to do one thing at a time (instead of trying to to do as much as I can all at once) and remember that I have time enough to save up what I had to use from my emergency fund during the 7 1/2 months I didn’t receive a paycheck and to update certain things in the house (counter tops, den, balcony, porch), everything should turn out splendidly!

I hope.

Below are photos of my entryway. Eventually the balusters, stair risers, & trim will be painted white. I may carry the soft gray from the loft to the wall behind the stairway. The living room will be painted white — modern & airy.

The second photo is a limited edition print by Lee Strasberger. She had completed a number a drawings inspired by Brassai’s photography of Paris at night (1933). I love Brassai & I love Strasberger’s interpretation — I think the piece looks gorgeous in this frame and against the turquoise/teal blue. I’m hoping to buy more of her work for other parts of the house. You can buy original art and prints by Lee here: Lee Strasberger on Etsy

Lee Strasburger Entryway ]]>