Well I did it again, I took forever to update. Thanks to everyone that’s sent emails or messages elsewhere asking how I’m doing. It means a lot to know that people care!

If you kept up with my blog last year, you’ll know that I was really scared of getting off prednisone because of the withdrawal and the fact that some people relapse when doing it. I’m so happy to report that I got off it at the start of this year without complications 😀 I felt terrible and had withdrawal symptoms for all of January and much of February, but it wasn’t nearly as bad as it could have been and now those problems are all but gone. Mere words cannot describe how relieved I am to be off it. It’s such a dangerous drug.

I’m still on a bunch of medication, but getting off prednisone has been a huge improvement. I still have days where I feel like crap more often than I’d like, but the number of these days is less now. My good days are also much higher quality than they were last year. I feel less foggy, less exhausted, and a lot more sharp. Most importantly, I feel like myself again.

Getting off prednisone has also helped me to LOOK like myself again. A common side effect of prednisone is moon face, where a person’s face swells up and appears fatter than it was before the medication. I’m pretty thin, so it was easy for me to notice when my face bloated. I will admit that some of it was in my head. I knew my face was different, and my mind made me think that my face was a lot fatter than it actually was. But there was still a noticeable difference.

Last year I didn’t talk about how my appearance made me feel. I think I chose to not talk about it because it seemed so superficial and shallow to talk about when I had other pressing problems like liver toxicity and hallucinations. But honestly, it was really hard. My hair was falling out, I had a fat face, and I felt so ugly. It was just another thing to accept on top of everything else, and it sucked. I’m glad those times are over and I’m back to looking normal again.

Despite how terrible 2014 was, there are still some good things to take away. Overall I think I’m most proud of how I improved as a poker player. I didn’t have a lot of time and energy, but the time I had I spent studying poker and improving my game. As a result, I am a much better player than I was before I got lupus, and it’s not even close.

I wrote a lot of posts about running bad last year, and it’s because I did. I ran below expectation and was down for the year every month until November. I’m not gonna lie, it was hard. I was miserable, discouraged and tilted pretty much the entire year. My mental game became so bad that even when I was winning in December, every session I was utterly convinced that I was losing money. When I was feeling unreasonable, I didn’t care that I was going through standard variance and that the reason it lasted so long was because of my lack of volume. All I could think was that I had lost all year and that it was never going to end and HOW COULD I RUN SO BAD?

Obviously the bad run did end. Like I said, I finally got on the positive side of the coin late in the year and ended 2014 with a profit. I finished the year a ton under EV, however. In total I ran over 100 average buy-ins below expectation, which equated to >$40/hour below EV. I will say that one good thing about running poorly is that it forces you to improve your game. Maybe I would be a lot worse at poker today if I had run hot last year.

Another positive of last year was my husband. My husband stuck by me through everything, no matter how depressed, bitchy, mean, selfish, or hopeless I got. I feel so lucky to have him. If I could, I would wish for everyone diagnosed with a chronic and life changing disease to have someone in their life as wonderful as he is.

As for this year, I’m pretty optimistic about it. I’ve been able to play a bit despite my drug tapering, and so far it’s been not good but also not bad. I’ve been reviewing on a regular basis, something I plan on doing all year to ensure I keep improving as much as possible. When I feel well, I intend to play as much as I can. Online poker isn’t as good as it used to be, but there’s still money to be made if you have the skill and the motivation.

Of course, my health is my first priority. I have to take really good care of myself to ensure that I don’t flare up and get forced back on prednisone again. Later on this month my doctor plans to reduce a couple of my drug dosages a bit, too, since the meds are carcinogens and it’s ideal to be on as small a dose possible. I’m a bit worried about it, but hopefully nothing too terrible happens. I expect to feel bad for a short time while my body adjusts, but in the end I should be able to handle it and feel decent again sooner than later. I hope.

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  • Reply Bob April 24, 2015 at 6:20 pm

    Good to hear that u are doing better. Health and love are very important in life. All the others things will hopefully fall in place as needed. Keep stress low and stay rested. Life is precious. Wish you well

    • Reply donkeybrains April 26, 2015 at 7:55 am

      Thanks Bob, I appreciate it! Your advice is right on about the stress and rest, I’ll be trying my best to follow it 🙂

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