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
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
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.
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?
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.
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.
I don’t care if I have lupus, life is still awesome.
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 😛
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.
I had the misfortune of meeting a very ignorant and self-righteous lady in the parking lot of a grocery store a few days ago. Luckily for me she had the name of a small business on her car, so I’m writing this blog entry and then I’ll be posting it on her business’s Facebook page. The reach of social media
It took around 3 weeks for me to receive a parking permit that allows me to park in handicapped parking spots if I need to do so. In the 2 weeks that I’ve had the permit, I think I’ve only used it 3 times, however. When there are other spots for me to park in, I use them. When I feel good on a particular day and I can walk extra distances without hurting my joints, I don’t park in these spots. I have had times when I’ve needed the spot but there hasn’t been one available, so I know what it’s like to have one taken unnecessarily. I don’t abuse the fact that I have a permit, and I hope others do the same.
After an appointment with my rheumatologist, I decided to go to Whole Foods on my way home. Walking a lot inflames my joints, something I have been instructed to avoid doing. The parking lot was very full, so I took the opportunity to use my parking permit which my doctor obviously decided I need. It was either that or walk probably 100 meters, something I didn’t want to do considering I’d already had to do a fair amount of walking that day.
Cue the ignorant lady that I am writing this blog entry for. Her car was parked right beside mine and as she was getting into it she said to me, “Next time leave that spot for someone that needs it.”
That instantly set me off. I asked her if she was serious and if she could see everything that was going on in my body. I can’t believe she actually had the nerve to literally harass me in the parking lot for something I had every right to be doing.
She said to me, “You look perfectly healthy.” I told her to Google lupus and arthritis. She told me that she knows someone that has lupus and knows all about it. This is complete bullshit because she clearly knows nothing about it. People with lupus usually look perfectly fine but they are still in terrible pain. People with lupus need to avoid aggravating their joints so that they don’t make things worse for themselves. If she actually knew someone with lupus, she would know these things. So yeah, I still recommend that she Googles it so that she can spare the next person she wants to spout her prejudiced nonsense to.
She said that she knows of people that borrow people’s cars so that they can use the parking permit. Even if people do things like this, it doesn’t give her the right to harass people in parking lots. Not to mention that harassing people in parking lots does nothing to solve this problem. Does she actually think that telling someone not to do it is going to prevent them from doing it? People that do selfish things like that aren’t going to care what she thinks. So it accomplishes nothing when she speaks to someone abusing it, and it annoys someone when she speaks to someone legit. Good plan, lady. Well played.
After being berated for a couple minutes, she said another ridiculous thing to me: “I said that to protect people like you.” Another bullshit statement that she said to make herself to feel better for opening her ignorant mouth. I’ve already said why it does nothing to help people like me. Not to mention there are better ways to go about improving the enforcement of parking permits than harassing sick people.
Having run a business myself in the past, I am not foolish enough to write the name of this lady’s business for the public to read since I know that no publicity is bad publicity. I will say, however, that I am shocked she can be in business in the first place given her obvious lack of people skills. And also her inability to apologize. “I’m sorry to hear you have lupus” is not an apology.
To the lady for whom this entry was written for: Your self-righteousness is incredibly insufferable. Don’t be so prejudiced. Don’t be so quick to judge people by their appearances. Both your business and personal life would probably improve if you took this advice. The lives of everyone around you would improve, too.
If you are so concerned with taking up spots that are close to the entrance of a store because other people need them, perhaps you could do us all a service and park farther away next time. You seemed to walk perfectly fine. And given the nature of your business, you are probably in fine shape. But I am sure you will not do this since you are a likely a giant hypocrite. Oh I’m sorry, did I just assume something about you? I’m certainly more on the mark than you were in the parking lot that day, that much I know.
A lot of people have asked me about my experiences leading up to my diagnosis of lupus and whether I was in a lot of pain, how I ended up in the hospital, etc. I definitely would like to blog about this for a number of reasons.
One reason is that it’s nice to be able to direct people somewhere if they want details on my situation. Another is that I want to be able to remember how things were to help me put things into perspective in the future. It’s only been a bit over a month since I was discharged from the hospital, and already I’ve started to forget what happened and what I experienced. It’s time to write it all down so that I can go back to it if I need to.
The biggest reason I want to blog about my experiences is to possibly help other people with autoimmune diseases in the future. When I thought I might have cancer last year, it helped me a lot to read forums and I also read a couple blogs written by people going through similar situations. Sometimes it helps to know that you aren’t the only one these things are happening to, so maybe one day I can do the same for someone.
If you’ve been following my blog, you’ll know that my health has been a mystery this past year. I was told there was a high chance I had lymphoma by an ENT specialist, and I also was tested for almost every infectious disease you can think of. I’ve gotten so many chest x-rays that I don’t even know how many I’ve had already. I’ve obviously gotten even more blood tests than that.
I was finally told that I should see a rheumatologist by my infectious disease specialist back in October. The wait time for this doctor was 6-8 months, so I just shrugged it off and didn’t think much of it. My GP told me that since I had no symptoms of anything, it was probably going to end up nothing and we were going to forget about it soon.
Symptoms finally starting showing in November. I developed bad joint pain in a number of areas, mostly my feet, wrists, fingers, and elbows. Some mornings I hurt so much that I couldn’t put my clothes on without help. I had to change the soap pump in my washroom to a bar of soap because it hurt too much to press the pump down.
The arthritis started at a terrible time for me because not only did I catch a cold, I had a plane ticket to visit the States for Thanksgiving. Before I left the country, I called my doctors office to see if I could see the rheumatologist sooner. They told me that since my condition worsened, I could probably get bumped up. I couldn’t see the doctor before my trip, though, so I went to out of town, sick and sore.
I’ll cut to the chase and just say it was the worst trip ever. I spent literally every day in bed and got increasingly more sick as the days went on. I really didn’t want to pay to see a doctor while out of town, so I stayed in bed and took medication, trying to keep my fever down. This was, in hindsight, incredibly stupid. I wish I could take this back and seen a doctor.
I finally went home, although I’m not sure how, given the state I was in. My mom picked me up to take me to the doctor the day after I got home and I collapsed in the doctors office. I drifed in an out of consciousness while he decided I had pneumonia and prescribed me antibiotics. My mom wouldn’t let me go home and I slept on couch cushions on the floor of her house and ate soup for days.
After almost a week of antibiotics, I was doing much better. My husband was still in the States but was coming home in a couple days, so I decided to go home. I didn’t have much of an appetite and I was extremely exhausted every day, but I didn’t have a fever anymore. I spent a lot of time resting but I was otherwise relatively fine.
I was finally able to see my doctor about my joint pain, which hadn’t bothered me much while I was out of town but came back with a vengeance in December. He said that he was going to try to get an earlier appointment for me but that it was probably going to be a wait still. He said I would have to live with my pain until the appointment but that I could take medication to try to lower the inflammation. I hate drugs but the pain was pretty bad, so I took a prescription for Celebrex.
A few days later my doctor called me with results of a blood test. He said I was anemic and also that I had a rheumatologist appointment in a month. I told him that I was doing okay on the Celebrex but that I felt really bad at night because I felt like the drug was wearing off. He told me to take it twice a day.
Later that night I was showering and noticed some strange spots on my leg. It looked like a rash. I had JUST seen my doctor that day and it was two days before Christmas, so I decided to ignore it for the time. I felt sick still, but I assumed I was just recovering from pneumonia still.
Christmas came and went with me staying home on my couch eating fruit and chocolate. In the days after Christmas, I got significantly worse. I felt feverish and sick and not myself. I stayed in bed all day in terrible pain, unable to get relief from anything. It hurt to move, it hurt to be in one spot, it just hurt period. I counted down the hours until I could take another Celebrex and only ate because Celebrex requires that you take it with food. I cried about how much pain I was in. I complained and whined when I had to eat or drink because I didn’t want to do it. I just wanted to lie down, but I could almost never sleep.
I wanted more drugs. It’s amazing how pain will turn you from someone that refuses to take any drugs for anything to someone that begs for them. I frequently said that I wish I could be knocked out. A couple times I thought to myself that I would be okay with dying so that I didn’t have to feel the pain anymore. I didn’t want to die, but it honestly didn’t seem like the worst thing at the time.
My husband finally put me in a car and tried to find a doctor for me. Problem was that it was just after Christmas and all the clinics were either at capacity or just closed. The other obvious option was the emergency room at the hospital, which was bound to have waits that were hours long. He took me to my mom. I almost certainly should have gone to the hospital, but instead I went to a TCM (a doctor specializing in traditional Chinese medicine).
I got some herbal medication and my mom told my husband to leave me with her again. I tried to cooperate and do what she told me, but it was really hard. I wasn’t myself at all. The first dose of the herbal medication seemed to make me feel a bit better the next day, but I couldn’t keep the second dose down.
FINALLY the Monday after Christmas, December 30th, came and I could see my doctor. He said I had scarlet fever and prescribed me more antibiotics. He told me to supplement my Celebrex with acetominophen to keep my fever down. Drugs, drugs, drugs.
I went back home with my husband a couple days later and continued taking the antibiotics. They didn’t seem to be helping much, though, so I went back to the doctor after 4 days to make sure that I was okay. He checked me over and said that I was on the right path. He told me to keep taking the drugs and that I’d soon be fine.
That night I became unresponsive. I wouldn’t eat or drink or even answer questions properly. My husband told me that when he asked me something, I would stare at him blankly and then stare off into space. He brought me food and I didn’t eat it. I just wanted to lie in bed and stare at the ceiling and listen to Matt Good (whose songs are ruined for me forever, by the way, because I now associate him with being sick). Thinking that my electrolytes needed to be increased, my husband made me drink some Pedialyte and then sent me to my bed (we were sleeping in separate rooms because I was so disturbing to sleep with).
Sometime in the middle of the night I had one of the most scary experiences of my life. I got up to use the washroom but I couldn’t figure out how to get out of my room. It was pitch black and while I could get to the door, I could not find the door knob no matter what I did. Knees on the floor, I started frantically pawing around the door, desperately trying to figure out how to get out. I started screaming and crying for help and wanted to get out so badly, but I couldn’t. I’m not sure how long I was trapped for.
I don’t know how, but I finally got out. I stumbled into the hallway, turned the light on, and collapsed on the floor outside the washroom. I don’t know how long I was there before my husband came out to use the washroom and found me.
Next thing I remember is being back in a bed and hearing him call 911. A bunch of people came and asked me questions and talked to each other about carrying me out of there. I remember them asking my husband if I could please have a pair of pants. I don’t know how I got carried outside, I guess it was in a stretcher. I remember being stabbed with an IV in the ambulance. It was cold during the ride.
I was kept in some waiting area in the hospital for a long time. My husband, who came to the hospital with me, eventually left early in the morning and my mom appeared. I got some x-rays, blood tests, and other tests that I can’t remember. I was moved a couple times before they figured out I would be there for a while, and I ended up in the short-term stay wing of the hospital.
That’s as much as I remember about the days before I ended up in the hospital. While my week in the hospital is something I never want to re-live again, I DO want to remember it, so I’ll be writing about that in the future too.
There’s not much else I want to write about in this particular blog entry. While typing all of this and remembering it again, it seems incredibly surreal. I was so out of my mind at the time, it feels like it was a different person.
I also find it interesting that what I call one of the worst experiences of my life was really all in my head. When I was “trapped” in my room, there was obviously a door knob the entire time. Why couldn’t I find it? I don’t understand it at all.
It was the start of a lot of things that happened in my head. While I was unwell and my inflammation was high, all sorts of things happened to my thoughts in the days I was in the hospital and the days that followed. Having had no experience with either mental illness or brain disease, it was all new to me and truthfully very scary.
More next time.
I currently get weekly blood tests so that my doctors can keep track of what’s happening to me. I went to get one today and the lady that did it didn’t do a very good job. First of all, it hurt (which it shouldn’t when done properly) and second of all, I had to put my own bandage on because she abandoned me and I was sick of sitting there.
I’ve gotten dozens of blood tests since this lupus stuff started, and I’m definitely going to get dozens more in the future. I really wish that people were trained to give them better. When I was at the hospital, I had one girl have to poke me multiple times because she couldn’t get the vein properly. That was after she failed to wipe me with an alcohol pad because she just forgot to.
I hate needles and have obviously had to learn to deal with them. I got a lumbar puncture in the hospital because they wanted to rule meningitis out. I can’t begin to tell you how scary that was for someone afraid of needles.
I got a lot of blood tests done in a short time when I was in the hospital at the start of the month. My electrolytes were insanely low so they were checking those every 3 hours. Then they were also running plenty of tests to try to figure out what was wrong with me.
Since I was getting blood work done every 3 hours, I obviously didn’t have time to heal in between needles. The people doing the tests (can someone tell me what they’re called? They’re not nurses, are they?) started looking at my right arm and going, “Wow, you must be so sore!”
To make matters worse, I had an IV in my left arm that was a huge problem. It was sore in the first place (ever since the guy in the ambulance stuck it in me), and then one of the porters pushing me in a stretcher across the hospital for one of my tests accidentally tripped over it and almost ripped it out. Then one of the technicians injected something into me for an MRI and it hurt like a bitch, and everything hurt a lot after that. I had to get an antibiotic via IV and I was in pain the entire time it went through me, so I had to change the IV to my right arm. The arm with all the blood test pokes. Sigh!
IV wounds in both arms meant hand blood tests after that. Let’s just say I highly recommend you never get a hand blood test. Do. Not. Like. Apparently I have good veins though! At least I didn’t have to get foot blood tests or anything exotic like that. And now I almost enjoy blood tests in my arm after knowing what blood tests in the hand feel like.
Okay no more needle talk. My medication seems to be going okay so far. The dose of one of them increased again this week, so I’ve been treading cautiously as said in my previous entry. I’ve had some digestive problems since starting it, so my stomach hurts a lot of the time. But it hasn’t been unbearable and it doesn’t prevent me from doing anything, so I am fine with it as long as my doctors are. And if I can handle oral medication, I don’t have to inject myself with medication! Bad for my liver, good for my sanity.
I got to play some poker last week and it seemed to go fine. I didn’t get to play any regs, presumably because I played too late. If I keep feeling okay, my next session will be soon and I will play during better hours because I need to play some regs.
Poker isn’t just about making money for me right now. If it were, I’d be playing lower stakes and just playing fish because there’s still money to be made there. Poker is about proving that I can function normally and still maintain my skill as a player. I’ve never been about mass multi-tabling and grinding dollars like a zombie.
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).