I logically acknowledge that the guilt I feel is ridiculous... it doesn't stop me from feeling it though.
I feel guilty that I'm not doing as much as I used to do.
I feel guilty when I take the time to go to yoga, or aquafit.
I feel guilty when I take the time to take care of myself.
I feel guilty for spending more money on healthy food.
I feel guilty when I need to sleep in a bit longer.
I feel guilty when I don't have the energy to do something I want to do.
I feel guilty when I miss out on things I want to do, because I can't do them.
The psych and diversity & social justice student in me wants to analyze the reasons why I feel guilty... but I think it just all comes down to the fact that we live in a society where you're seen as selfish if you do things for yourself.
Sometimes it's okay to be selfish. It's easy for me to tell other people that, and believe that for other people... it's harder for me to believe that for myself.
The Healthy Rants of a sometimes healthy mature University student.
Wednesday 30 September 2015
Sunday 27 September 2015
You don't realize the strength you have, until you have to have it.
I can't do this.
I can't even count how many times in the past 2 months I've said or thought that.
2 months. It has been 2 months since I was admitted into the hospital... It's been over 2 months since I got sick.
How did that happen? When did that happen?
If you had told me 2 months ago, that in 2 months, I would still not be better... I wouldn't have been able to deal with it.
But it's been 2 months... and I'm still not better... but I'm here... and I'm dealing with it.
Logically, thinking I guess I am kind of better. I probably don't have DRESS Syndrome anymore. My liver enzymes have been steadily coming down the past few weeks. I haven't had any reflare ups. So really I'm probably mostly just dealing with all the prednisone crap.
So while I might not FEEL better, there are things that are getting better in my body.
I did not feel strong the past 2 months... I still don't feel strong. I feel weak, and vulnerable... I've been obsessively listening to the song Because of The Shame by Against Me! (I love the acoustic and the original). The lyrics "Because of the shame I associate with vulnerability I am numbing myself completely" speaks to me. The song isn't at all about what I'm dealing with... but it hits me in the heart and soul. It also highlights the hypocrite I am. I don't think being vulnerable is shameful at all... for other people. For me it is. Double standards.
I think part of me is really lucky that I'm absolutely terrified of recreational drugs. Marijuana and I are NOT friends. It has landed me in the hospital before. I think the past 2 months, if I didn't have the fear of recreational drugs, I would have turned to them... to something.
Instead of numbing myself, I was an emotional rollercoaster (I still am a bit... I feel more... sane though).
I think I may have a somewhat unhealthy reliance on hydroxyzine, which I prescribed to help me sleep. At first it was useful, I would have a heck of a time sleeping when I was on really high doses of steroids, which wasn't healthy (I went three days without sleep), I don't think I necessarily *need* it to sleep anymore, because of the lower dose of steroids I'm on now... but I like how quickly it makes me fall asleep, and if I wake up on it, how quickly it knocks me back out. I *should* be getting back into the hang of sleeping on my own if I can... it's so much easier this way though, and I don't have the energy yet to try to stop taking it. Soon hopefully... maybe.
The Internal Medicine doctor said something about me being lucky that I managed to be on such high doses for so long without going into psychosis... There were times I think I was definitely on the verge. I was not me. My thoughts were not mine. My voice was not mine. My body was not mine. I didn't know who I was... I'm starting to get me back now and it feels great... but I also have the "Why the fuck did I do that/act like that/say that"? reflections.
There's this underlying fear that it's all going to go down the drain again... but I have to keep remembering that I am immensely better than I was 2 months ago. That I got this far. It took longer than I wanted/hoped, but I made it through.
Michael J. Fox has a quote that I always loved, it's "Acceptance doesn't mean resignation; it means understanding that something is what it is and that there's got to be a way through it." I'm going to tie that in with a Florence and the Machines lyric quote "I'm not giving up, I'm just giving in".
I'm all about the quotes today! I've accepted that this is the way that I am, that this is a progression, that things will get better, are getting better, but are not better. I'm not giving up, but I'm giving into that fact. I think that's an important distinction because there were a lot of times I was ready to give up. I think in acceptance, I'm figuring out that there's a way through it.
I didn't realize the strength I had, until I looked back and realized how far I've come.
I can't even count how many times in the past 2 months I've said or thought that.
2 months. It has been 2 months since I was admitted into the hospital... It's been over 2 months since I got sick.
How did that happen? When did that happen?
If you had told me 2 months ago, that in 2 months, I would still not be better... I wouldn't have been able to deal with it.
But it's been 2 months... and I'm still not better... but I'm here... and I'm dealing with it.
Logically, thinking I guess I am kind of better. I probably don't have DRESS Syndrome anymore. My liver enzymes have been steadily coming down the past few weeks. I haven't had any reflare ups. So really I'm probably mostly just dealing with all the prednisone crap.
So while I might not FEEL better, there are things that are getting better in my body.
I did not feel strong the past 2 months... I still don't feel strong. I feel weak, and vulnerable... I've been obsessively listening to the song Because of The Shame by Against Me! (I love the acoustic and the original). The lyrics "Because of the shame I associate with vulnerability I am numbing myself completely" speaks to me. The song isn't at all about what I'm dealing with... but it hits me in the heart and soul. It also highlights the hypocrite I am. I don't think being vulnerable is shameful at all... for other people. For me it is. Double standards.
I think part of me is really lucky that I'm absolutely terrified of recreational drugs. Marijuana and I are NOT friends. It has landed me in the hospital before. I think the past 2 months, if I didn't have the fear of recreational drugs, I would have turned to them... to something.
Instead of numbing myself, I was an emotional rollercoaster (I still am a bit... I feel more... sane though).
I think I may have a somewhat unhealthy reliance on hydroxyzine, which I prescribed to help me sleep. At first it was useful, I would have a heck of a time sleeping when I was on really high doses of steroids, which wasn't healthy (I went three days without sleep), I don't think I necessarily *need* it to sleep anymore, because of the lower dose of steroids I'm on now... but I like how quickly it makes me fall asleep, and if I wake up on it, how quickly it knocks me back out. I *should* be getting back into the hang of sleeping on my own if I can... it's so much easier this way though, and I don't have the energy yet to try to stop taking it. Soon hopefully... maybe.
The Internal Medicine doctor said something about me being lucky that I managed to be on such high doses for so long without going into psychosis... There were times I think I was definitely on the verge. I was not me. My thoughts were not mine. My voice was not mine. My body was not mine. I didn't know who I was... I'm starting to get me back now and it feels great... but I also have the "Why the fuck did I do that/act like that/say that"? reflections.
There's this underlying fear that it's all going to go down the drain again... but I have to keep remembering that I am immensely better than I was 2 months ago. That I got this far. It took longer than I wanted/hoped, but I made it through.
Michael J. Fox has a quote that I always loved, it's "Acceptance doesn't mean resignation; it means understanding that something is what it is and that there's got to be a way through it." I'm going to tie that in with a Florence and the Machines lyric quote "I'm not giving up, I'm just giving in".
I'm all about the quotes today! I've accepted that this is the way that I am, that this is a progression, that things will get better, are getting better, but are not better. I'm not giving up, but I'm giving into that fact. I think that's an important distinction because there were a lot of times I was ready to give up. I think in acceptance, I'm figuring out that there's a way through it.
I didn't realize the strength I had, until I looked back and realized how far I've come.
Wednesday 23 September 2015
Religiosity/You deserved it
Something that has been... bothering me... for awhile, so I'm going to post about it.
When I was in the hospital, someone made a comment, that essentially boils down to, bad things happened to me because I wasn't Christian (or religious enough).
There is a lot about that comment that I find interesting.
The whole "you deserved it because..." aspect of almost dying blows my mind.
A central question, especially in Christianity is "why do bad things happen to good people"... the "you got sick because God isn't in your life enough" sounds like some old testament stuff to me, and that's not anything I subscribe to.
I don't identify as Christian. I was raised United, but I've always been more... liberal than United. My religious views on Facebook say "I believe in love" and I think that's the best way to describe my beliefs.
I believe in a higher power... well, I believe in higher powers. I believe whatever you believe in (or don't believe in), as long as you strive to be a good person, and be good to other people, that is what is important. Your actions are more important than your beliefs. I believe that calling yourself something, does not necessarily make you that thing. I have met a lot of people who have called themselves a religion, but don't subscribe to the fundamental beliefs of that religion (which for most religions is about loving and treating others well... The first tenet of the Satanic Temple is "One should strive to act with compassion and empathy towards all creatures in accordance with reason."). We as a society like to focus on our few differences instead of the many things we have in common though.
I pray to (the Christian) God, I pray to various Goddesses, I pray to Saint Michael when I'm sick.
When someone gets sick, there is an aspect of themselves that typically blames themselves, "What did I do to deserve this?" while some things may have lifestyle or environmental factors, how you behave as a person usually doesn't contribute greatly to random illnesses (or things like severe drug reactions).
Telling someone they deserved to almost die because they aren't "Christian enough" doesn't seem like a very Christian thing to say.
WWJD? Not be an asshole...
When I was in the hospital, someone made a comment, that essentially boils down to, bad things happened to me because I wasn't Christian (or religious enough).
There is a lot about that comment that I find interesting.
The whole "you deserved it because..." aspect of almost dying blows my mind.
A central question, especially in Christianity is "why do bad things happen to good people"... the "you got sick because God isn't in your life enough" sounds like some old testament stuff to me, and that's not anything I subscribe to.
I don't identify as Christian. I was raised United, but I've always been more... liberal than United. My religious views on Facebook say "I believe in love" and I think that's the best way to describe my beliefs.
I believe in a higher power... well, I believe in higher powers. I believe whatever you believe in (or don't believe in), as long as you strive to be a good person, and be good to other people, that is what is important. Your actions are more important than your beliefs. I believe that calling yourself something, does not necessarily make you that thing. I have met a lot of people who have called themselves a religion, but don't subscribe to the fundamental beliefs of that religion (which for most religions is about loving and treating others well... The first tenet of the Satanic Temple is "One should strive to act with compassion and empathy towards all creatures in accordance with reason."). We as a society like to focus on our few differences instead of the many things we have in common though.
I pray to (the Christian) God, I pray to various Goddesses, I pray to Saint Michael when I'm sick.
When someone gets sick, there is an aspect of themselves that typically blames themselves, "What did I do to deserve this?" while some things may have lifestyle or environmental factors, how you behave as a person usually doesn't contribute greatly to random illnesses (or things like severe drug reactions).
Telling someone they deserved to almost die because they aren't "Christian enough" doesn't seem like a very Christian thing to say.
WWJD? Not be an asshole...
Friday 18 September 2015
Drop it like it's hot (second taper)
I went down to 80mg on Wednesday, and I'm doing okay!!
No re-flare up (YAY!)
Yesterday was a bitch. I was hot, sweaty (moreso than normal prednisone issues), had heart palpitations, was shaky/jittery, had a headache, felt nauseated, and did not get out of bed (except to eat and use the washroom) until like 5pm... and only because I absolutely had to.
Today... is better. I got out of bed at 9:30. I did two presentations, got some work done, got my blood work done, did some grocery shopping, dishes and laundry... I felt hot and clammy all day (my temperature is fine though)... but it was also unseasonably hot out, and my normal tiredness and muscle soreness... and some raging... but I feel... better than I've felt in a long time. (Still not "well" or "good" but... less shitty?)
I'll take less shitty.
I will also take all the hell that tapering has, is, and is going to cause, if it means getting the heck of prednisone faster, and returning to my normal.
I drop down to 60mg next week, and then get reassessed the week after (I also see the Internal Medicine doctor next week).
I've actually been able to do things... like read assignments, and work on my Honours thesis project (I found out since I'm distributing it across Canada I need to have a French version, so I've been working on that... and need to start my Ethics proposal soon). School work makes me ridiculously happy. It gives me a sense of normalcy and productivity... ummm... and I can do the readings in bed.
As much as I resisted it at first, it was a really good idea to only do 2 courses and my Honours (I was originally going to take 4 and my Honours- which is 2 course credits, so 6 courses). I think I would have broken. My Honours is very flexible, but this week keeping up with my two courses was a bit of a struggle (well... I skipped them both on Thursday because I couldn't get out of bed... so if I had missed 4, that would be even more stuff to catch up on... although thankfully all I missed was discussion and a lecture, I had read what I needed to for the week).
So everyone was right and I'm glad I listened to everyone else and not to my stubbornness.
I've already decided on my next tattoo (once I'm off of the prednisone for long enough that I start healing normally again and my skin is normal)
No re-flare up (YAY!)
Yesterday was a bitch. I was hot, sweaty (moreso than normal prednisone issues), had heart palpitations, was shaky/jittery, had a headache, felt nauseated, and did not get out of bed (except to eat and use the washroom) until like 5pm... and only because I absolutely had to.
Today... is better. I got out of bed at 9:30. I did two presentations, got some work done, got my blood work done, did some grocery shopping, dishes and laundry... I felt hot and clammy all day (my temperature is fine though)... but it was also unseasonably hot out, and my normal tiredness and muscle soreness... and some raging... but I feel... better than I've felt in a long time. (Still not "well" or "good" but... less shitty?)
I'll take less shitty.
I will also take all the hell that tapering has, is, and is going to cause, if it means getting the heck of prednisone faster, and returning to my normal.
I drop down to 60mg next week, and then get reassessed the week after (I also see the Internal Medicine doctor next week).
I've actually been able to do things... like read assignments, and work on my Honours thesis project (I found out since I'm distributing it across Canada I need to have a French version, so I've been working on that... and need to start my Ethics proposal soon). School work makes me ridiculously happy. It gives me a sense of normalcy and productivity... ummm... and I can do the readings in bed.
As much as I resisted it at first, it was a really good idea to only do 2 courses and my Honours (I was originally going to take 4 and my Honours- which is 2 course credits, so 6 courses). I think I would have broken. My Honours is very flexible, but this week keeping up with my two courses was a bit of a struggle (well... I skipped them both on Thursday because I couldn't get out of bed... so if I had missed 4, that would be even more stuff to catch up on... although thankfully all I missed was discussion and a lecture, I had read what I needed to for the week).
So everyone was right and I'm glad I listened to everyone else and not to my stubbornness.
I've already decided on my next tattoo (once I'm off of the prednisone for long enough that I start healing normally again and my skin is normal)
crossed out (It's the chemical structure for Carbamazepine). I was debating between it or C15H12N2O crossed out which is the molecular formula for it... but I think the picture works better for where I want it (on my forearm, I have a multipolar neuron on my other forearm).
Months to go... things to look forward to (maybe I'll be able to get it at Christmas when I go back to Ontario!)
Stay healthy,
Elyse
Saturday 12 September 2015
Prednisone Drop
Today is day 4 of my "lower" dose of prednisone. (100mg/day instead of 120mg/day)
Anytime I drop, I risk a reflare up... THANKFULLY that did not happen. No new rashness, no pustules. My face is a bit puffier (even more so than before) but that is apparently still just the prednisone.
I do have some tapering side effects. I'm back to being exhausted all the time. The first two days my entire body was sore. I couldn't go up a flight of stairs, it hurt to walk. I almost fell asleep in class despite having gotten over 18 hours of sleep.
Today I feel... not normal, but not as horrible. I'm still really tired. It's weird to have your body tired but your brain not. I laid in bed for an hour this morning after waking up because although my brain was awake and ready to go, I think my body could have happily stayed in bed all day. I had too much to do though.
I have too much to do tomorrow too. I'm taking Monday off as a Mental Health day since the past week has been kind of a mess. Although I have bloodwork, a doctors appointment, a presentation and a meeting on Monday... so by Mental Health Day I mean I'm not physically going into work to do work things, and I don't have class.
I think I need to work on my Mental Health Days... I feel like Netflix or HGTV and snacks should be involved.
Something I find... interesting. Is all the people who ask how I am, how I'm feeling. I feel really bad saying "pretty shitty". I'm better than I was when I was in the hospital... but I'm not good. Yes I'm at school, yes I'm at work... but that doesn't mean I'm better, it doesn't mean I'm healthy, it doesn't mean I feel well... it means I'm doing what I have to do to exist... and to survive mentally. I think if I didn't have class and work I'd go insane from boredom. I really need the normalcy.
I need the little social things that I occasionally feel well enough to do. A friend of mine and I went for supper last night then drove around talking (she drove... thankfully... I didn't have the energy for that).
I also have found that I get really annoyed with people, being around people a lot, and it's not their fault. It's hard because I usually love people. I think it's because I feel like I have to be "on" the entire time, and it's so damn exhausting. I love you... but I don't want to talk to you after 3 hours of class. I'm tired. The mere thought of putting a coherent sentence together and have it come out of my mouth makes me want to cry. Trying to follow conversations too... so much talking. Shhh.
On Monday I find out how my liver is doing with all this tapering. The doctor said eventually I will only need to see her every second week and only need bloodwork once a week... Eventually means she doesn't really know when, but it's because it is based on how consistent my liver enzymes are.
I need to talk to her, or the Internal Med doctor about the weird cramping. I think I'm deficient in magnesium or potassium or something from the prednisone, but I'd like to be tested, or have a doctor's opinion on it. I get these horrible cramps in my calves and arches of my feet that feel like my muscles are being torn apart. I got one in my right hand today, it felt like someone was twisting my palm and pulling it.
I need to remember as I wean, that tapering doesn't mean I'm magically better, it's a process, I'm not going to be be "better or "well" for another few months and I still need to take care of myself in the mean time.
I sometimes feel like this whole thing was the world telling me to slow the fuck down because for years I didn't listen. I'm listening now... or trying my hardest to at least.
Anytime I drop, I risk a reflare up... THANKFULLY that did not happen. No new rashness, no pustules. My face is a bit puffier (even more so than before) but that is apparently still just the prednisone.
I do have some tapering side effects. I'm back to being exhausted all the time. The first two days my entire body was sore. I couldn't go up a flight of stairs, it hurt to walk. I almost fell asleep in class despite having gotten over 18 hours of sleep.
Today I feel... not normal, but not as horrible. I'm still really tired. It's weird to have your body tired but your brain not. I laid in bed for an hour this morning after waking up because although my brain was awake and ready to go, I think my body could have happily stayed in bed all day. I had too much to do though.
I have too much to do tomorrow too. I'm taking Monday off as a Mental Health day since the past week has been kind of a mess. Although I have bloodwork, a doctors appointment, a presentation and a meeting on Monday... so by Mental Health Day I mean I'm not physically going into work to do work things, and I don't have class.
I think I need to work on my Mental Health Days... I feel like Netflix or HGTV and snacks should be involved.
Something I find... interesting. Is all the people who ask how I am, how I'm feeling. I feel really bad saying "pretty shitty". I'm better than I was when I was in the hospital... but I'm not good. Yes I'm at school, yes I'm at work... but that doesn't mean I'm better, it doesn't mean I'm healthy, it doesn't mean I feel well... it means I'm doing what I have to do to exist... and to survive mentally. I think if I didn't have class and work I'd go insane from boredom. I really need the normalcy.
I need the little social things that I occasionally feel well enough to do. A friend of mine and I went for supper last night then drove around talking (she drove... thankfully... I didn't have the energy for that).
I also have found that I get really annoyed with people, being around people a lot, and it's not their fault. It's hard because I usually love people. I think it's because I feel like I have to be "on" the entire time, and it's so damn exhausting. I love you... but I don't want to talk to you after 3 hours of class. I'm tired. The mere thought of putting a coherent sentence together and have it come out of my mouth makes me want to cry. Trying to follow conversations too... so much talking. Shhh.
On Monday I find out how my liver is doing with all this tapering. The doctor said eventually I will only need to see her every second week and only need bloodwork once a week... Eventually means she doesn't really know when, but it's because it is based on how consistent my liver enzymes are.
I need to talk to her, or the Internal Med doctor about the weird cramping. I think I'm deficient in magnesium or potassium or something from the prednisone, but I'd like to be tested, or have a doctor's opinion on it. I get these horrible cramps in my calves and arches of my feet that feel like my muscles are being torn apart. I got one in my right hand today, it felt like someone was twisting my palm and pulling it.
I need to remember as I wean, that tapering doesn't mean I'm magically better, it's a process, I'm not going to be be "better or "well" for another few months and I still need to take care of myself in the mean time.
I sometimes feel like this whole thing was the world telling me to slow the fuck down because for years I didn't listen. I'm listening now... or trying my hardest to at least.
Tuesday 8 September 2015
Excitement and Fear...
Finally.
Over a month after I was discharged from the hospital... progress.
I start my first taper, off (hopefully), prednisone.
I say that... but technically I've tapered twice. I went from IV to oral, which is a taper, and then back on IV and then back on oral, another taper.
It doesn't really count though, especially since the second oral dose was higher than the first oral dose.
This is real though. It counts. It's also a big drop which is kind of scary. We're going from 120mg/day to 100mg/day. Still a really high dose.
I'm excited. It feels like progress. My liver enzymes FINALLY are below 200 (They are still 2-3x higher than normal, but under 200 means I should be safe to drop down).
With all that excitement comes a ton of fear...
Any time I taper I risk a flare up.
Any time I taper I risk ending up back in the hospital.
PLUS all the crap that comes with tapering off prednisone... I'm hoping that it's still a high enough dose that my body doesn't notice THAT much. Everyone I've talked to has told me how it's hell weaning off prednisone.
I am supposed to reduce my stress in general, but especially over the next few days... which funnily enough are my busiest most stressful days. Urg.
I just need my liver enzymes to stay down, I need my rash to not flare up... I need something to go RIGHT for once since this happened.
Oh yeah, because I also probably have Cushing Syndrome... since MS, DRESS Syndrome and Steroid Induced Diabetes is not enough. I see the Internal Med doctor in 2 weeks and will find out for sure.
The hope that this brings... makes me happy. I needed it. Even if it all goes to hell, the hope I have right now keeps me going.
Over a month after I was discharged from the hospital... progress.
I start my first taper, off (hopefully), prednisone.
I say that... but technically I've tapered twice. I went from IV to oral, which is a taper, and then back on IV and then back on oral, another taper.
It doesn't really count though, especially since the second oral dose was higher than the first oral dose.
This is real though. It counts. It's also a big drop which is kind of scary. We're going from 120mg/day to 100mg/day. Still a really high dose.
I'm excited. It feels like progress. My liver enzymes FINALLY are below 200 (They are still 2-3x higher than normal, but under 200 means I should be safe to drop down).
With all that excitement comes a ton of fear...
Any time I taper I risk a flare up.
Any time I taper I risk ending up back in the hospital.
PLUS all the crap that comes with tapering off prednisone... I'm hoping that it's still a high enough dose that my body doesn't notice THAT much. Everyone I've talked to has told me how it's hell weaning off prednisone.
I am supposed to reduce my stress in general, but especially over the next few days... which funnily enough are my busiest most stressful days. Urg.
I just need my liver enzymes to stay down, I need my rash to not flare up... I need something to go RIGHT for once since this happened.
Oh yeah, because I also probably have Cushing Syndrome... since MS, DRESS Syndrome and Steroid Induced Diabetes is not enough. I see the Internal Med doctor in 2 weeks and will find out for sure.
The hope that this brings... makes me happy. I needed it. Even if it all goes to hell, the hope I have right now keeps me going.
Monday 7 September 2015
Not my body...
My rashy body.
My scarred body.
Puffy face, I look in the mirror
Who are you?
Thin skin
Peeling skin
Feeling out of place inside.
Chapped lips
Itchy body
Painful body
Cramping limbs at times.
Weak
Tired
Too sore to move.
Palpitations
Shaky limbs
Heavy eyes
Fast thoughts
Can't sleep, but can't work
Anger
Rage
Fear
I want to eat all the food
I can't eat all the food
This strange syndrome
These strange side effects
My body is a stranger.
My body is not my own...
But I'm trapped inside it.
My scarred body.
Puffy face, I look in the mirror
Who are you?
Thin skin
Peeling skin
Feeling out of place inside.
Chapped lips
Itchy body
Painful body
Cramping limbs at times.
Weak
Tired
Too sore to move.
Palpitations
Shaky limbs
Heavy eyes
Fast thoughts
Can't sleep, but can't work
Anger
Rage
Fear
I want to eat all the food
I can't eat all the food
This strange syndrome
These strange side effects
My body is a stranger.
My body is not my own...
But I'm trapped inside it.
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