This blog has been slightly depressing ever since I got diagnosed with lupus three years ago. So it’s cool to write this post with something positive!
The last time I wrote back in April, it was to say that my rheumatologist wanted me to increase my medication again. I didn’t, but I was discouraged by my lack of improvement. Life went on, though, and nothing got worse. I definitely take care of myself better now than I used to before I got diagnosed, so I just continued on as normal.
I’ve seen my doctor twice more since my last blog post. The first time we left everything the same again. But then I got a surprise the second time: she suggested that I try to get off the immunosuppressant. (insert shocked smiley here)
It was really nice that she did this because I had actually been prepared to ask her if I could try to get off it against her wishes. So when she made the suggestion herself, my day got so much easier and so much better! I was all smiles that day.
I got off the medication completely after Twitchcon in October, which was two months ago. And I’m feeling great! I’ve had absolutely zero problems since then, not even a hint of joint pain. In fact, my joints bothered me more often when I was on the medication compared to now that I’m off. I’m sure that’s a coincidence, but it’s an interesting thing to consider.
I can’t describe how much happier I am now that I’m not taking that terrible drug. So much of the pain I had from the lupus diagnosis was psychological, which can sometimes be worse than physical pain. I’m so grateful that I was able to get off it and that things are going very well since.
I went to the rheumatologist today, so I figured it’s time for a long overdue update on my health. Overall I’ve been feeling really good. Pretty much ever since I got off prednisone, I’ve felt well enough to do pretty much anything I want on a daily basis.
We had some tentative travel plans for this year, but there was one thing stopping me: I wanted to reduce the amount of medication I was on. My body is a lot more vulnerable while tapering medication, which makes it a poor idea to travel while attempting to do so. So I had to choose: travel or taper. I chose taper.
In case you’re wondering why I want to reduce my medication so badly, it’s because my medication has been proven to increase the risk of cancer. When your drugs comes with a cancer warning, they’re unsurprisingly less fun to take.
I try not to think about what I’m ingesting when I pop the pills. If I think about it, I feel really anxious and stressed out. As I’ve said many times in this blog in the past, I’ve always been very anti-meds. It makes me feel sick to think about all the drugs I take on a daily basis. My subconcious agrees with me – recently I had a dream where I was taking a bunch of pills, but I couldn’t manage to swallow them. That’s some deep shit right there.
Anyway, I started tapering during the second half of last year. Basically I reduce the dosage of one of my meds by 25 mg every 3 months or so. I started at 100 mg of the stuff last year and now I’m down to 25. My most recent taper was a couple weeks ago.
The interesting thing about these meds is that you can’t see the affects of reduction right away. Most lupus patients are actually able to not take them at all for two weeks before they see any negative affects. Sometimes it takes months for the negative affects to take place. This is why I have to wait 3 months in between tapers. If my doctor had it her way, I would be waiting 6 months in between tapers. But she knows I’m really impatient.
Today she told me that she thought I should go back up to 50 mg. The reason for this is that I’ve recently developed these strange lesions on my fingers. They’re small and red and look like bug bites, but they’re painful to the touch rather than itchy. Neither of us knows what they are, but they’re clear signs of inflammation. She wanted me to increase my meds back to what they were before they developed.
I told her I really didn’t want to do that. We don’t know for sure that these things are due to lupus, and we don’t know that increasing the meds will cause them to go away.
In the end, I got my way and she told me to keep an eye on the lesions. She did caution me, though, that I had to take this seriously. She had never told me this before, but she told me that she has another patient with CNS lupus and that person never recovered from their initial flare up. They are slower in the mind now and just aren’t the way they used to me. She said that I was able to get back to my normal self last time, but if I flare again, will I bounce back again? She’s not sure.
Talk about a damper on my day. I have been feeling like shit about the convo every since it happened. It’s been a while since I felt this down about lupus. Sometimes I get a little sad that I have to deal with it, but I usually get over it pretty quickly because my life is still pretty sweet. Today is a little harder.
It tilts me that I have to poison myself to have a life now. That I’m taking away from my future self so that I can enjoy the present. Good luck future me, I’m sorry I’m giving you cancer. But at least I am alive now. Yay?
Anyway, this is a little bit if a vent. Sorry for the rant. I know I’ll be okay no matter what happens, and that as long as I keep a close eye on my joints, everything will be fine. It’s just been a shitty day.
For a more uplifting version of Courtney, check out my latest vlog. I posted it this past weekend on YouTube if you missed it
I’m writing this on my phone while on a flight to Chicago. It’s almost scary how good I am at typing on this thing. We’re landing in an hour and I’m bored of reading Game of Thrones. Seems like as good of a time as any to write a blog post that’s, oh…2 months overdue?
We’re going to Pennsylvania to visit Dave’s family for Thanksgiving. And I have to approach this trip with some amount of trepidation because it marks the two year anniversary of when I got very sick and eventually became diagnosed with lupus. If you want to know the entire story, you’ll have to go back in time in this blog to read it. But here are the cliffs: had a cold, went to Pennsylvania for Thanksgiving, got sick with pneumonia, went home, got Scarlet fever, went to hospital, lupus diagnosis.
I spent most of my visit in bed sick with fever two years ago. At Thanksgiving dinner, I fell asleep while sitting with Dave’s parents on the couch. This was the first time I had ever met them, too! Talk about a bad first impression 😛 I’m happy to be visiting this week, but in a weird way I’m looking forward to it being over because in my mind, it will prove to me that I’m stronger than I was two years ago. Yes, I can go on a trip to visit my husband’s family and eat food and hang out with people like a normal human being!
As for my health, things seem to be going well. I feel infinitely better now that I’m off prednisone, and I usually have good energy and motivation. Of course I have some bad days where I’m inexplicably tired or exhausted, but they’re more rare than I would have thought. And since losing my hair last year and suffering liver toxicity, I’ve had no further complications from my medication.
With regards to my medication, however, I always have it in the back of my mind that I need to get off it. When I think about it too hard while taking it, I have a sick feeling in the pit of my stomach about the situation. I’ve always been that person who refused to take a Tylenol when I had a headache. I never took any medication ever. And yet here I am, taking these pills every day, pills that have warnings of them because they’re really bad for me. But they’re “necessary,” so I take them.
Are they necessary? I really don’t know. I’m pretty convinced that the pharmaceutical industry is a giant scam, but I’m too scared to cut myself off the meds cold turkey. I can’t describe to you how terrible it was in the month leading up to my diagnosis; I would do almost anything to avoid feeling that way again. So I keep taking the pills.
My acupuncturist is convinced that I don’t need them and has outright said, “If you trusted me, you would get off the drugs and I would show you how right I am.” When I tell my rheumatologist that I would like to get off them, she tells me that I can try to lower my dosage slowly, but I can’t do it all at once. So like the stupid gullible girl I am, I’ve been listening to my rheumatologist and cutting the dosage down slowly. Excruciatingly slowly. But I’ve enjoyed feeling better this year and I’m reluctant to give it up, even if it means I’m slowly killing myself with drugs. So I guess I’ll just keep going.
Anyway, that’s my long winded health update. Cliffs: I’m fine for now and have had no lupus complications this past year.
Life is busy as usual with Stack & Fade, DFS, and Twitch streaming. This coming week is going to be my first since August that I haven’t streamed at least four days, and it’s going to be weird! I definitely need the break, though. I’ve said it in the past but I’ll say it again: I didn’t realize how sick of a grind Twitch streaming is. Combine it with the website and DFS and it feels like I’m working all day every day with no break ever. I love all of it so much and I’m so happy to be doing it all. But yes, I need this break.
Where poker is concerned, I’ve been running really terribly since September. Not only that, games are very tough at the moment thanks to a high number of regs in the games at the moment. It’s really sucked, but I’m trying to hang tough and fight through it. It hasn’t all been bad, though. Here’s a video of me winning a $109 HU hyper MTT for the first time ever!
Thanks for reading. I’m gonna have to go back to the start of this post to reread it because to be honest, I have no clue what I said! Thanks for your company though, it’s been nice to take a break from my iPad grinding. And now, back to direwolves and dragons.
P.S. Regular viewers of my Twitch stream will be pleased to know that I heard several people ordering tomato juice during the beverage service.
It’s been a while! I’ve been so busy with other things lately and, as a result my blog here has been sooo neglected. But SO much is happening right now. It’s so exciting!!!
The biggest thing I did recently was leave the $200 hyper heads-up division this past month. This was an extremely difficult decision for me and one that took me months to make.
I decided to leave mostly because of my Twitch stream. It’s not easy to stream heads-up because of the waiting times in between games (have to sit in lobbies and wait for people to sit). It’s also made more difficult by the fact that triers can sit me at any time while I’m in the lobbies. I like playing regs, but I don’t wish to play them live on stream. Not only is it ten times more difficult to play poker while streaming, I also don’t want the general public to know all my reg ranges.
For these reasons, I decided to leave. It was a very sad day for me, to be completely honest. I worked on my hyper HU game A LOT over the past year, and I had gotten infinitely better as a result. It was just time, though. I have new goals, and heads-up just wasn’t fitting in.
Most of the time I spend playing poker these days is on stream. I’m really loving Twitch! It’s fun to interact with people and it really motivates me to play longer hours. It is distracting and therefore it forces me to play around 50% of the tables I would normally play, but I really think it is worth it because I enjoy poker so much more this way. If you want to watch me play, you can find me at twitch.tv/courtiebee. I stream every Monday, Wednesday, Friday, and Saturday, as well as some Sundays.
I will say that streaming live is a lot harder than I thought it would be. The number of mistakes I’ve made while live on Twitch is actually quite staggering, haha. And people are often VERY quick to jump on mistakes. For example, the other day I accidentally folded a straight flush draw to a flop jam. I got absolutely BERATED by one guy in chat for doing this. He told me couldn’t understand how I was ever in the $200 division and he couldn’t understand how I could possibly be a pro.
There’s a lot of reasons for making mistakes on stream. The main reason is that I am simply more distracted and much more likely to make careless mistakes. I’ve checked back straights on the river due to being distracted and not realizing I had the nuts. I’ve incorrectly said my opponent donk bet when he was, in fact, in position. In the case of the straight flush draw, I didn’t realize he had a straight draw and completely neglected to see half my outs.
Sometimes the mistakes are inexplicable. I’ll be chatting away, see my hand, know EXACTLY what I have, but still do something stupid. And then I’ll think about it later and say, wtf, why did I do that? I’ll also just simply run out of time to make decisions because I’m spending too much time talking. I’ve timed out of huge pocket pairs and top pair situations too many times to count.
The good thing is that my mistakes are getting fewer and that streaming is getting easier. Like all things that require practice, I know it’s just going to take time. The experienced Twitch streamers can all play tons of tables and chat with their viewers like it’s walk in the park. I hope that soon I will be there too!
I’ve been playing mostly spin & go’s on stream, although lately I’ve also been playing MTTs. I have work to do in both formats, since both games are slightly different from HU SnGs. Like streaming, slowly but surely I’ll get better!
Life is so busy because my husband and I also launched a DFS website! It’s called Stack & Fade and it’s all about news and community. We have a daily fantasy sports forum for discussions and we’re really hoping to build the best DFS community around! If you have any interest in daily fantasy sports or you want to learn about it, please visit the site and have a look.
I’m definitely going to start updating this blog on a more regular basis. I have a lot of stuff to do, including setting up more social media and my YouTube. But it’s all coming. I’m so excited!
P.S. I feel so much better this year. Infinitely better. I think I’m overdoing projects slightly because I feel like I have to make up for lost time. But that’s the thing: I don’t want to waste this time that I have feeling good. I’ve learned that life is precious, gotta gogogo while you can.
My trip to the rheumatologist last month was uneventful. My medication stayed the same because I’m not considered stable until I’ve been off prednisone for 6 months, and my doctor wanted to keep things the same since I’m doing relatively fine.
I’ve felt pretty awful the last couple weeks, though, which sucks. I haven’t been sleeping well and I’ve been so tired lately. It sucks because I’ve really been enjoying playing poker these days, especially some of the $200 HU reg battles. I’ve been working on my game a fair amount lately, and I’m eager to try some stuff out. I can’t really do this when I’m not feeling well, though, since it’s basically just lighting money on fire when edges are so small.
I’ve been keeping myself busy doing other somewhat productive things. My husband is starting a website, so I’ve been editing a bit for him when I’m too tired to do anything poker related. Being an editor is pretty mindless, I can do it half asleep anytime.
I don’t mind the days when lupus makes me tired as long as I don’t lose my motivation. Days when I lack motivation are just the worst, though. Those are days when I know I’m not myself because when I’m feeling like myself, I NEVER lack for motivation. When I’m myself, I want to do everything.
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.
I know… it’s been forever since I last wrote. Thanks so much to everyone that’s sent me a message or left a comment checking in. It means so much to me that there are people that check this blog even though it’s been AGES since my last post.
My life is boring these days, which is actually really nice. Around this time last year I was in the States with pneumonia and a couple months of hell in front of me. Today I’m at home playing heads-up poker and the biggest thing I have to complain about is the terrible action.
I’m still on prednisone, so I’m not stable yet. I have a lot of really tired days still, especially when I’ve recently tapered my dosage. Next year, when I finally get off it, I think it’s going to get a lot better for me. I’ll obviously still be limited to some extent thanks to lupus, but I’ll be able to enjoy life without prednisone side effects.
Prednisone is famous for its side effects. If you google it, the Internet is full of horror stories about it. It really is the most amazing and most horrible drug ever.
I’ve definitely had my share of side effects. I have some water retention in my face, so some days my face is puffy. It’s weird because it looks like I’ve gained a lot of weight, but then you look at my body and I’m as skinny as ever. And it’s also weird looking at past pictures of myself and being like, oh, I used to look wayyyy better… I’m not super vain and obsessed with how I look or anything, but I really could do without a fat face. So kinda looking forward to that going away.
What I’m most looking forward to is no more insomnia and no more severe mood swings. The insomnia was worse at the start of the year, but I still get a few nights every month where I can’t sleep. The mood swings suck the most, though. Usually if I’m too tired to do productive things, I still WANT to do them. On moody days, I’m depressed, unmotivated, anxious, restless, and just really unhappy. I never used to feel this way pre-lupus, so I’m assuming it has to be with prednisone and I really hope these days stop once I’m off it.
I’ve had a variety of other short term strange side effects from the drugs. In January I had really nasty peeling skin all over my body. I’m pretty glad that stopped. I also had a month in which I couldn’t stop eating and probably ingested 2 years worth of sugar. I was eating burgers and 3 ice cream sandwiches almost every day, which is really odd for me because I’m usually a really healthy eater. That also passed after January, which is good because I was definitely heading for diabetes at that rate 😛 (although I think prednisone can also cause diabetes, so it would have all made sense)
Earlier this year I had chest tightness and breathing problems, both of which are really scary. This was at the same time as a lot of irregular heartbeats, which was really uncomfortable and unsettling.
I had a really strange period of time when my arms would get pins and needles really fast when I put them in a certain position, and eventually they went numb if I kept them that way. That lasted a couple months and now it doesn’t happen anymore. Another thing that happened recently but doesn’t happen anymore is my hand was shaking when I held a spoon or any other object in mid-air.
Every time I told my husband about one of these strange, annoying, or scary things that my body was doing, he would google them and then announce to me that they were prednisone side effects. Eventually I was like, wtf, is EVERYTHING a prednisone side effect?? And the answer is yes. Everything is a prednisone side effect. Or can be. Prednisone does everything.
I’m down to 2.5mg of the stuff. It can be really tough to go from 2.5mg to 0 for some people, so I’m nervous about when I have to make that step. Overall, though, it’s so nice to be on a lower dose. If things go well in January 2015, I’ll have been on it a full year. I hope my body forgives me for being on it for so long. The long term side effects of it are infinitely worse than any of the short term ones I described, so it’s extremely important for me to get off it ASAP. Wish me luck!
“Christine Miserandino, a lupus sufferer, was at a café a few years ago when her best friend asked her what it really felt like to be her. She was moved by the fact that her friend truly wanted to understand in a visceral way what her life was like. So she grabbed 12 spoons. She explained that most people are given an unlimited number of spoons each day to do whatever they want, but when you have an invisible illness, your spoons are numbered and you have to use them very carefully so they take you through an entire day.
She asked her friend to list off every activity she did from waking up. With each activity, Christine explained the huge effort that it took just to get through it and with each activity mentioned she took away a spoon. She explained that at that rate she’d have no spoons left in no time and not be able to get through the morning! So she explained that she had to very carefully parse out the spoons–and not do so many things that she had taken for granted when she was healthy. Her friend quickly understood — and apparently so did the rest of the Invisible Illness world. The word Spoonie has now become synonymous in the social media world with Invisible Illness.”
I love this explanation of how it feels to have lupus because it’s something that is so much easier to understand than my usual explanations. I often explain to people that I’m more tired than I used to be, but that doesn’t accurately describe how it is at all.
The truth is that, as explained in the blog post, I have to pick and choose what I do. I can go get my car fixed during the day, but that means I probably can’t cook dinner later at night because I’ll be too tired. On a good day I can clean my bathroom and do laundry, or I can play poker. I can’t do it all. And on bad days, I can’t do any of it.
It’s hard for “normal” people to understand because to many of them, it just seems lazy. They can go to work during the day and then get dinner with friends at night. If I have a dinner date with someone, I better be home during the day and I better be taking it easy, otherwise I’ll feel like crap at night.
It takes an entire day for me to play a few hours of poker. I usually wake up feeling really bad until I’ve eaten and taken my medication. Once I eat, drink, and take some meds, I feel a bit better but rarely well enough to play poker. While I’m waiting to eat lunch, I try to review some hand histories to get my brain working.
After lunch (which is often in the afternoon for me because I usually wake up pretty late) is when I start to feel more like myself on the good days. I’ll review, warm up, and then start playing. I can play 2 to 4 hours depending on action and how I feel on any particular day. It makes me really happy to get in 4 hours, almost like I’m a normal person.
My doctor says that when my medication is stable and I’ve been off prednisone for a few months, I’ll start to feel more normal again. Right now I have a really hard time stringing together days where I feel well enough to play poker. But in the future, despite having lupus, I should be able to. I just have to be patient.
I’m really not a patient person at all. But I guess I’ll have to learn. Or go crazy trying.
I think I’m sick. My husband has a cold, so it makes sense. But I don’t really know for sure because I feel cold-like symptoms (lethargy, body aches, fatigue) on a regular basis, so I have no idea what’s what.
My throat feels funny though. I have some post nasal drip. Those aren’t usual for me, so I guess I’m sick.
It sucks. I just want to feel better so that I can do things. I haven’t felt good the last few days and I feel so bored and restless. I hate sitting around. It’s the worst.
I think I was the wrong person to get lupus. Someone that likes to play video games all day and do nothing should have gotten it, not me :/
I travelled for the first time since getting sick last November. A good friend got married in Portland, so my husband and I drove down there for three nights. It’s just a 5 hour drive and I didn’t even do most of the driving, but I felt extremely exhausted for the entire trip. It was a nice wedding, but overall it was pretty tough for me. I was surprised at how bad I felt the entire time.
I’m not really supposed to travel right now for a variety of reasons, the main ones being that I shouldn’t be too far from my doctors and healthcare and I’m not supposed to be doing anything that tires me easily. I actually had a trip to Australia booked and planned for this past March that I had to cancel due to my diagnosis. I’m pretty disappointed that I didn’t get to go because I’ve always wanted to go to Australia.
I definitely won’t be planning any further trips anytime soon. It’s just way to exhausting and I really can’t predict how I’m going to feel at any given time. This is especially true given that I’m still on prednisone and currently trying to wean off it.
I went down to 25 mg of prednisone today, the lowest dose I’ve been on since the start of January. I feel pretty bad at the moment. My body hurts, particularly my hands, wrists, and ankles. I’m really tired and lethargic, my chest feels weird, and I just feel awful overall. I’m trying to get myself to do things, but the only thing I want to do is go to bed.
I’ve read about people feeling horrible for an entire week when tapering prednisone once they get around 20 mg or less. I really hope this doesn’t happen to me, I can’t stand the thought of feeling like this for longer than a day or two. Although since I don’t really have a choice in the matter, it’s probably best if I just don’t think about it.
Some good news is that reducing my Imuran dose seems to have fixed the liver problems I was having. My liver enzymes are still too high, but they are vastly improved from last month’s blood test. My hair also appears to have stopped falling out, which is a pretty sweet bonus. If this continues to next month, it will show that my body just can’t handle the dose of Imuran that my rheumatologist wanted me to be on. I’m not sure whether I can stay on a lower dose or whether I have to switch drugs, though. At least it means that I can probably keep taking the herbal medication that my TCM has been giving me.