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Spoonie Theory

My friend linked me to a wonderful blog post about “invisible illnesses” and how to explain them to normal healthy people.

http://www.thedailymigraine.com/blog/2014/6/25/are-you-a-spoonie

“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.

It might be a sore throat?

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 :/

/whine

lupus and poker

So glad it’s June! I had my worst poker month (dollar-wise) ever in May. I guess the good thing is that it came after my best poker month ever in April (since playing HU). Unfortunately, both months pretty much cancelled out and I’m around break even playing poker this year. Yawn.

Unsurprisingly, I haven’t played a lot of games so far in 2014. The reason I was able to have my best/worst months despite lack of volume was that I raised my average buy-in due to playing heads-up turbos in addition to hypers. Last month I ran hot at my highest buy-in turbos and this month I ran bad. I also ran bad at everything else I played this month, so there’s also that :P Overall I ran 40 average buy-ins below EV which is pretty standard but still pretty annoying.

I’ve run bad all year which has been easy to do since I haven’t played many games. It honestly really sucks being unable to play volume because downswings seem to last forever. I have to just keep telling myself that this is the way it is while I’m sick and unable to put in the hours.

Due to my currently unstable medications, I’m not exactly sure when things will turn around and I’ll be able to put in more hours of poker. I’m really hoping it’ll be sooner than later, although I probably shouldn’t expect it as long as I’m tapering off prednisone. I hope that sometime in the next few months I’ll at least figure out which medication my liver and body can handle. And then hopefully I get off prednisone by the end of the year.

In addition to rust and variance and maintaining skill, I’ve also had to deal with the realization that I possibly can’t achieve what I wanted to achieve in poker before I got sick. Poker has been my life the past however many years. It’s been the only thing I’ve worked on, and it’s been a lot of time and effort to get to the stakes I’m at today.

It’s pretty depressing to realize that because of lupus and the fact that I can no longer put full time hours into the game, I probably can’t move up in stakes like I had wanted to last year. Last year I was playing some $300 HU hypers, but this year I definitely can’t do that. Moving up takes a lot of hours, hours that I don’t have right now.

I don’t think this will always be the case, but for now it definitely is. Thankfully I do well at the stakes I’m at now and I’ve worked pretty hard to ensure that I remain at the top of my game. At least if I keep doing that, I might have the option to pick up where I left off once my medication is figured out and my body becomes stable.

travel bans

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.

little things

Today I went for a blood test and it was the first time I ever refrained from telling them I was afraid of needles.

Yes, this warranted a blog post. Small victories, right??

P.S. I’m still afraid of needles

liver games

I must be the worst blogger ever. Not only did I write one of those annoying cryptic entries as my last post, I then took almost a month to follow it up. If you’re wondering whether I am ashamed of myself, the answer is yes!

Life has been extremely busy lately and I’m having trouble balancing. I want to get everything done, but my energy is the limiting factor and I find myself really tired near the end of a lot of days. If I push myself too hard for too many days in a row, I crash at some point and feel extremely shitty for a bunch of days afterward.

I’m still learning my body. The lack of energy and stamina sucks because I’ve always been a GO GO GO type of person. I’ve always been one of those people that doesn’t like to sleep, I just want to stay up and do things. But now if I don’t rest, I pay a really high price.

Back in March I mentioned that I was having a few problems with my liver and heart. I had my heart checked out via X-ray and echo cardiogram, an ultrasound for the heart (I’ve had way too many ultrasounds considering that I’ve never been pregnant). Both the tests came back normal and I haven’t had any chest pain or tightness for a while, so that’s a relief.

My liver, on the other hand, is another story. In March my liver enzymes were elevated, which showed that something was causing it distress. My blood test in April was even worse. I used to hate blood tests because I was afraid of needles. Now I hate them because I’m scared to see the results of them.

I’ve already mentioned that the drugs I’ve been prescribed could be causing my liver problems. However, I am also seeing a TCM (traditional Chinese medicine) doctor and he has been giving me herbal medication. So in theory, my liver could be distressed by either of these things.

There’s a lot of debate about TCM and whether it works. I don’t want to write a lot about this now, but the short story is that my mom and aunt really wanted me to try it, so I did. I was extremely skeptical at first, to the point of sitting there and outright arguing with the TCM during our consultations. He didn’t like me because I was skeptical and unwilling to do what he wanted. I didn’t like him because he couldn’t understand why I was so scared to take his medication.

My TCM and I finally reached a compromise and I’ve now been seeing him for around 3 months. He is convinced that he can help me and get me off the drugs the rheumatologist has put me on (and wants me on for the rest of my life). I didn’t believe him at first. But now I’m starting to believe that maybe he can do it.

When I saw that my liver enzymes were higher than ever in April, I was really stressed out because it meant that I had a dilemma on my hands. I was going to have to tell my rheumatologist that I was seeing a TCM and that I was taking herbal medication. In order to save my liver, I would need to either stop taking the drug prescribed by the rheumatologist or the herbal medication given by the TCM. So which do I stop?

I feel like any normal rational human being raised in western society would instantly stop taking the herbal medication considering it’s not regulated like prescription drugs are and is, in theory, less effective and less safe. The 3 months that I’ve spent with my TCM, though, have made me believe otherwise. I’m becoming more and more scared of the prescription drugs that I take every day.

Both the prescription drugs and the herbal medication takes weeks to months to kick in and actually start working in my body. This means that if I were to stop taking one of them but then decide to start up again in the future, I would have to wait months in order to benefit from either of them again. This makes it more important to make the correct decision the first time.

My rheumatologist believes that the drugs she has me on are controlling my disease. My TCM believes that I don’t need the drugs and that as long as I take the occasional herbal medication, go to acupuncture, eat properly, and take care of myself, I will recover. The problem is that I want my rheumatologist to be wrong and my TCM to be right. I don’t want to take drugs.

This has led me to want to gamble and just stop taking the prescription drugs. I want to do what my TCM says and see what happens. I want to be off the drugs.

This, obviously, is fairly risky. If my TCM is wrong and I flare up, I’ll have massive brain inflammation again and will probably get sent back to the hospital to get hooked back up to the IV. I am not exactly sure if I can suffer permanent brain damage from this. I would have to assume no as long as I get medication to bring the inflammation down, but it’s something I would need to check before I went off the drugs.

It would set me back if the TCM plan goes wrong and I get sent back to the hospital. But if the worst case scenario is anything less than brain damage, I kind of think it’s worth it. The potential reward appears to be a life without drugs or, at the very least, a life with less drugs.

I think I’m in denial that lupus is forever. Somehow my TCM made me believe that he could cure me.

I swear I used to be a sensible person :S

I saw my rheumatologist recently and, in response to my latest blood test, she decided to reduce my drug dose to see if that would help my liver. I’m going to get another blood test next week to see if it helped. If things don’t change, it will be decision time.

time to gamble

If you had a choice between risking the temporary life as you know it to ensure that your life in 20 years isn’t a train wreck, it’s a no brainer to take it, right?

Is this the time to say YOLO?

in the mind

As you can see from my last post, I’ve been in a pretty good frame of mind the last little while. I’m learning to cope with the fact that my life isn’t the same as it used to be, and I’m still able to enjoy the good moments that I have.

I get down on my situation every so often, usually at night when I’m lying in bed and have time to think. I’ve broken down about it a few times since leaving the hospital in January, but these are becoming less frequent.

Usually my negative thoughts are the “it’s not fair” type of thoughts. It’s not fair that I take care of myself and this happened to me. It’s not fair that my lupus affects my brain. It’s not fair that I’m tired all the time. It’s not fair that I have to pop 13 pills every morning and that they’re eventually gonna kill my liver and/or give me cancer.

Yawn.

I get bored of my “it’s not fair” thoughts because they’re so lame. When I’m being rational, I know that my life is still great. I have a supportive husband and good friends and family. But sometimes I just can’t help them. And I guess it’s okay to just have a good cry every so often anyway.

I had my first “setback” in over a month at bedtime last night. I haven’t talked about the brain problems that lupus causes me in this blog much, mostly because I don’t know how to describe them and I don’t know what to call them. But also because my drugs have been controlling the problems and they haven’t been on my mind much.

Probably the best way to describe them are to call them hallucinations, mostly of the auditory version. The sounds around me change and get amplified and distorted. I get extremely anxious and feel trapped and like I can’t control what’s happening around me.

I had my first hallucination since January last night while in bed. I’ve had them several times by now so I knew what was happening, but it was still extremely difficult to not freak out. I tried to deal with it in the dark for a few minutes but that was really scary for me, so I ended up getting out of bed, finding the light (which is a lot harder to do when this is happening than it sounds), and waking up my husband.

The entire episode lasted less than 10 minutes. They never last long. But they’re very scary and now I’m really disappointed that it happened. I don’t understand why it happened when I’m taking so much medication. Did the 5mg of prednisone that I cut out really cause this? And if so, does this mean that my other drugs aren’t controlling my disease?

I could talk a long time about the hallucinations I’ve had in the past and hope to never have again. One time I thought I had to pay my husband to use a towel to shower, and then I couldn’t understand how I was going to be able to afford to shower every day. Another few times I thought I destroyed the world because something impossible happened and WTF HOW DID THAT HAPPEN, OMG WE’RE GOING TO DIE.

Some of the worst ones were when I got consumed by certain thoughts and couldn’t think about anything else but also couldn’t talk about it. I remember one night all I could think about was coconut for 10 min. Messy coconut to be exact, whatever that means. It’s so messed up that even I can’t understand it now. But I remember telling my husband that I’m scared and all I can think about is coconut, but it took me like 5 full minutes to come up with the word coconut. I had a lot of blockages at the time when it came to communicating; sometimes the words couldn’t come to mind and I couldn’t explain what I was feeling.

All the hallucinations stopped when I increased my medication, the prednisone to be exact. My rheumatologist had wanted me to be on a higher dose anyway, so I increased it to 40mg and enjoyed 1.5 months without any episodes at all.

I really hope that last night was a one-off and that I can taper down like planned. It’s been great feeling like myself while on predisone the last month or so, but I’m so scared to stay on it long term and really want to get off it.

Truth

I don’t care if I have lupus, life is still awesome.

health update

A huge problem that people with lupus have is inflammation to and problems with their major organs. We have to keep a close watch on our kidneys, livers, hearts, and (in my case) brains.

Last time I went to see my rheumatologist, she mentioned that I might have to get referred to a nephrologist for my kidneys if my urine samples remained the same, so I’ve been a bit worried about that. From the reading I’ve done and from what I’ve heard, it seems really standard for people with lupus to have tons of kidney problems and eventually end up on dialysis, which I most certainly don’t want.

I went to see the rheumatologist with some fresh blood work and urine samples yesterday, and luckily for me my kidneys seem fine for now. The bad thing is that my liver enzymes are up, and my heart is acting kind of weird. So instead of a kidney specialist, I get to have a chest x-ray (the millionth one in the last two years) and an echocardiogram.

My doctor thinks that the latest drug she put me on is causing my hair to fall out and is possibly taxing my liver. I’ve definitely lost tons of hair and if this rate of hair loss keeps up, I don’t see how I’m not bald in a couple months. I don’t really want to change drugs just for hair, but I suppose if it helps my liver too, I could be convinced :P

I’m taking cheap meds right now, but if I were to change to one of the others that she’s thinking of, I’m gonna be paying $1-$2k/month depending on what she chooses. It would be nice if one of the cheap options could just work, sigh.

My hair loss COULD be from prednisone. I’m hoping that all my bad side effects are from prednisone and that they all magically disappear once I taper off it.

Since I haven’t had any strange mental occurrences since last month, my doctor decided to start the prednisone taper today. I’m only going down 5 mg per month, which seems a lot slower of a taper than I’ve read online from other people’s experiences. While I’m extremely impatient to get off it, though, I don’t mind going down in dose slowly because it means the taper is a lot more likely to happen successfully. I’ve read so many horror stories about prednisone tapering. I have to admit that I’m really scared of it and really crossing my fingers that it goes okay.