Life

1 in 1000

It’s been 3 months. That’s a record since starting this blog. A lot has happened. My life has changed a lot.

I was diagnosed with lupus, systemic lupus erythematosus (SLE) to be exact. Lupus is an incurable autoimmune disease in which the immune system attacks its own body’s cells.

Although you are more likely to get lupus if you are a woman, no one knows how you get it and it’s a 1 in 1000 chance you’re unlucky enough to have it. So I got binked on by life?

I’ll be on drugs the rest of my life and my life span will be reduced a bit, especially if the drugs destroy my liver or give me cancer. The drugs will allow me to live a somewhat normal life, though. Lupus elevates the inflammation in my body which results in a lot of horrible symptoms, but the drugs bring the inflammation down and remove the symptoms or make them possible to deal with.

Lupus affects everyone differently. My particular lupus attacks my joints, bone marrow, and brain. Because it affects my brain, obviously a major organ, I have to take a lot of drugs to ensure the inflammation doesn’t give me brain damage.

I got really unlucky that my disease affects my brain. The “lucky” ones just deal with joint pain and skin rashes, but I get hallucinations and I hear things. If you thought I was a crazy woman before, now at least it’s confirmed! I became even more crazy :)

To deal with my crazy thoughts and the voices in my head, my doctors put me on prednisone, which is a corticosteroid. If you have no experience with it, the best way I can describe it is that it is both the best and worst drug in the world. It fixes everything, but at the cost of an insane number of side effects. It ruins some people’s lives because their body gets reliant on it and they just wither away from debilitating side effects after a number of years.

I don’t want to be on prednisone because of all the problems it causes, but it’s either that or hallucinations and really messed up thoughts. I can’t begin to describe how it feels to lose control of your thoughts, it’s really the scariest thing in the world. I was on a dose of prednisone that was too low when I first got released from the hospital (which I suppose I can blog about another time), and the thoughts I sometimes had at night got pretty ridiculous. I’ve since increased my dose and thankfully eliminated these, but they were really terrible and scary.

Right now I’m in the process with working with my rheumatologist to figure out the drugs I can take to replace prednisone. It’s a slow process that unfortunately takes months. In the meantime I get to have lots of blood tests and see lots of specialists.

On a daily basis, lupus makes me very tired and sore. I feel really bad in the mornings until I take my medication, and I get tired very easily. The most frustrating thing is that I am forced to take it easy, even when I don’t want to. I like to leave the house, exercise, get things done, and make money (playing poker of course). Now I have to choose to do one of those things per day and then spend the rest of the day being useless in front of the TV or a book. My joints hurt so I can’t do a lot of physical activity.

If I’m going to look on the bright side, it doesn’t appear I got any brain damage from inflammation and it doesn’t look like I should now that I’m controlling it with drugs. Once I’ve let the drugs kick in after waking up in the morning, I can think as well as I’ve ever been able to think, which is great news. This means I will be able to play poker.

The number of hours I can play remains to be seen, but the fact that I think well is basically the best news I could have hoped for. I was really scared that I wouldn’t be able to think well enough and it was GG poker. Other than being more tired than I used to be (a lot more tired), I don’t feel I’ve lost anything when it comes to that.

I haven’t played any poker since last November, when I went out of town and then got very sick (with the help of lupus). I’m in the process of increasing the doses for my medication the next two weeks, so I’m taking things cautiously. I intend on playing some HU games this week, though, and seeing how it goes. I plan to play mostly regs, so they should probably be licking their chops since I’m almost certainly going to be rusty ;)

I have no fears when it comes to blogging about my disease and letting people know my physical and mental problems. I can’t think of a way for anyone to take advantage of this information. I will never play poker when I feel less than 100%. And if I play and think that my skill level has decreased and I just can’t win at the games I’m playing anymore, I will drop down in stakes or quit poker.

I have a lot more to say on this matter but my hands hurt (thanks lupus!) and this is very long. If you have an autoimmune disease or have experience with lupus, I would love to hear your thoughts. Leave a comment or write me an email: courtneygeepoker @ gmail.com (delete the spaces).

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5 Comments

  • Reply Thomas Luedke January 28, 2014 at 5:03 am

    I have a hungarian poker playing friend who has an auto-immune disease. Definitely not lupus but I don’t know the name. That he has to deal with chronic pain and take a bunch of medications with occasional surgeries is all I know really.

    If you’d like me to put you in contact with him, I will (assuming he approves). He’s a really smart dude.

    • Reply donkeybrains January 28, 2014 at 6:51 am

      I would love to chat with him if he’s okay with it. Give him my Skype, assuming you still have it? Thanks so much, it will be nice to talk to someone that has similar problems.

      It’s nice to hear from you, Thomas. Hopefully you don’t mind if I bug you on Skype sometime in the future, I gotta see where in the world you are these days.

  • Reply mela February 25, 2014 at 9:27 pm

    Hi,

    This is mela from 2p2 husng forum, whom you might or might not recognise. I accidentally stopped by your blog and read this posting.. and it reminded me of someone I used to know who was also suffering from lupus. She was also my beloved one, and quite naturally, I had to suffer a lot too, for a long long time.

    It’s all bygones now. We don’t talk to each other anymore, but it seems like she is doing well, and that’s all I could ask for. I hardly know you at all, but I just wanted to wish you all the best luck. Remember, lupus tends to dwell on stressed minds, so make sure you aren’t stressed of poker or anything else in life, really.

    Also, I might still remember some useful things and tips for lupus, so please don’t hesitate to contact me (you can PM me on 2p2) whenever necessary.

    What more can I say.. I’m very sorry to hear about this, and I do hope this does not get any worse.

    mela

  • Reply Mark Henderson March 25, 2014 at 4:49 pm

    Dear Courtney, I have always found you to be an interesting read. Bright and funny. I will be thinking of you much more now. If good, positive thoughts mean anything, you will have many coming your way from me. Mark

  • Reply donkeybrains April 12, 2014 at 7:43 am

    Thank you Mark, that means a lot to me :) <3

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