How much can you take, before you break?

2 weeks ago, I felt normal(ish) for the first time in months.
I had hope.  I felt relief.
It all came crashing down.

I have a rash all over my body again (and nausea, vomiting, light headedness and digestive issues). The ER doctor didn't think it is a relapse of DRESS Syndrome, but thinks it may be a viral infection.  I have to wait for antibody test results to come back.

My liver enzymes are up, after being steadily in the ideal zone for over a month.  This means I had to go back on a higher dose of prednisone.  The ER doctor only bumped me up to 10mg/day (already my blood sugar is pissed off at me again), I will know once I see the dermatologist if I have to go up more.

The 3 months until I'm off prednisone is slipping away... so it my ability to remain sane.

You can only remain strong for so long.  I keep reminding myself that last January, when I had my really bad MS relapse, I didn't think I could deal with it... but I did.  In July when I developed DRESS Syndrome, I didn't think I could deal with it... but I did.  When I got steroid induced diabetes, wild mood swings, a moon face, a hump on my back, I didn't think I could deal with it... but I did.

So why don't I think I can deal with this much longer?

With MS I get breaks.  Things go back to not being so horrible. Sometimes not as good as they were before, but a break from the mental and physical exhaustion that comes with a relapse.  I don't get that break with this... I get gradual, slow progressions of kind of, sort of being a bit better... and then it all gets screwed up some how.

I just want a break from everything, before I break.

The end is not near...

What would you sacrifice for knowledge?

Your social life?
Your extracurriculars?

Yes my heart whispers... yes.


The end is no longer near.  For my sanity I'm glad I found that out now, and not before.  It has been 4 months of hell.  It feels like longer... and there's three more to come.  That means I'm BARELY halfway there.  The end is not near.  The worst is most likely over though.  I cling onto that hope.

There is a lot I would sacrifice for knowledge, but I can't let my health become one of them.   This semester was rough, and I know it's because I did more than I should have.  My schoolwork slipped because I piled on other things, and my body couldn't handle it all.

Next semester I need to do better... I need to be better.

I will sacrifice more of my social life, and more of my extracurricular activities, because I don't want to sacrifice my classes.  I am really looking forward to them.  School is a constant that keeps me sane.

Winter is coming, the roughest time of the year for me.  For my physical health and my mental health, and fear is starting to build... going into it with the fragility of both, makes me weary.

Three more months... three more months until I'm normal again... if normal can ever happen.

The end is near...

Peaks and valleys of health... of emotions... the end seems almost in sight, but I'm too scared to be hopeful.

I'm trying to make plans.  Plans for Christmas, plans for next summer.  I found out about the GESIS Summer School in Survey Methodology in Cologne, Germany.  They have some amazing courses.  They're geared towards Masters and PhD students, and researchers,  but there are some courses that I can take... that I want to take (if next year is similar to this past year).  The fees are decently reasonable ($100-$250 euros per course), it's the getting there and staying there that is going to be costly.  I'm going to apply to every bursary I can find next semester, and save up as much as I can in the summer.  I think the knowledge will help me out a lot in my future career, and projects in Grad school, and it would be an amazing experience.

I still have this fear that it's all going to go to hell.  The past few months have taught me to be afraid.  I don't like it.  When I was diagnosed with MS in 2006 I gained a sense of freedom... which may sound silly, but I had spent several years prior being afraid of what was wrong with me, the knowledge of finding out what was wrong granted me a sense of freedom and relief. I realized that I needed to do things, to not let the world hold me back.  To not be afraid.  I've done things that I wanted to do, that scared me, over the years... with some restrictions... there is no jumping off bridges or out of planes, that's a fear that has no rewards for me.  I travelled by myself on several occasions, went to university, moved halfway across the country, to place where I didn't know anyone... these all came with great rewards.

These past few months though... there's so much fear.  Fear of being sick, fear of being hurt, fear of everything.  Even mundane things... it's like I'm on autopilot of letting things control and restrict me.   I'm hoping it's a side effect of the prednisone, and once I'm finally off it, that I might be okay again.  I need to be okay again.  I know I'll never be the same... but I need to be okay.

Writing is helping.  This blog.  I've also done 2 guest blog posts where I review teas for a local tea company:

http://www.ladybakersteatrolley.com/fallisintheair/

http://www.ladybakersteatrolley.com/holiday-season-is-here/

Their teas are friggen fantastic.

15mg... I'm on 15mg of prednisone for 2 weeks, then 10mg for 2 weeks... then hopefully tapered off completely shortly after that.  The end is in sight... I want my body back.  I want my body to have a break from being pumped full of all these medications.

Who are you?

You're so bright, so beautiful,
I long for you to tell me everything is alright
But the battle isn't over yet
I look at you and see a stranger
I have known you for so long
No one knows you better
But who are you now?
You rebel against the norms
Fighting, challenging them,
For what?
To be someone whose eyes I can't meet?
I try to adapt, because I so desperately want you near
The changes that have come made you so different
I know you well enough to know that I don't know you anymore.
My hand caresses your skin, so pale, so thin, so cold
I don't know this touch
Your eyes are hard and empty.
You take me on this rollercoaster ride of emotions
and I fight to hold on
You know I never liked amusement parks
Every time I look at you, I wonder if it will be my last
I want it to be the last.
I want to go back to the way we were,
The relationship we had
When you were predictable
When we had an understanding
When we took care of each other
When I wasn't afraid of you.
I want to go back to the time when I loved my body... instead of being afraid of it.

Losing

Gasping for air
Unable to breath
Nowhere to turn
Spinning
Dizzy
Falling
I catch myself
I brace myself
Waves washing over me
Shaking
Shattering
Crashing
Sitting on the floor in the bathroom
Unable to move
Tears streaming down my face
Weak
Broken
Defeated
I can't find my breath
I can't live like this
I can't be like this

One step forward, two steps back... aka clusterf*ck.

I'm not dead... so there's that.  Yay looking on the positive side of things.

I woke up this morning with a very important realization... (thank you dream!)

I have been screwing up my medication for the past 2 weeks.

I was supposed to go from 50, to 40 to 30... and be on 30mg/day this week, for my prednisone.

I went from 50 to 20 to 15, because the pills I somehow got into my head (I don't know HOW, I've been taking them as to "top ups" since the beginning) were 10mgs are actually 5mgs.  I KNOW prednisone doesn't exist in 10s.  I've told people that.  I know that I have a bottle full of 5s... I used them when I was on 120mg to make up the 20, 80 and 60 to make up the difference between the 50s and it... yet somehow when I dropped below 50, my brain decided that 4 of them equalled 40 and 3 of them equalled 30.

On the plus side of things (other than not being dead, because apparently dropping off so quickly when you've been on a high dose for so long can be super dangerous), my random high blood pressure, random weird blood sugars I've been having super high morning blood sugars that just randomly started at the end of last week, and I've had days where I've gone from 6.0 to 24.3 to 4.6... my body doesn't know what it's doing.  I also have been exhausted all the time, even sleeping 12 or 14hrs isn't enough, and I have been extremely forgetful... more so than normal, and to the point it was causing me concern.

My doctor who is on maternity leave right now had me come into her office shortly after I called to say "what do I do??" (I emailed my nurse when I woke up and she suggested I call the doctor's office first to see if there was a way to get ahold of her).   I got blood work done as well, and I think they may have blown my vein.  It really hurts still and they didn't get blood out of it.

Essentially though, I wasted the last 2 weeks, because I go back on 40mg tomorrow, and then start the tapering schedule all over again (because clearly my body is not okay with the fast taper)

I also now have to be careful of my blood pressure because it might try to regulate itself, and I'm on medication to help lower your blood pressure... so I could get lows.

Ahh.

This is such an interesting journey.

On the fun side of things, I wrote a guest blog for a local tea company that has AMAZING teas.  It was really fun.  I like doing tea reviews :D

Mini breakdowns and new perspectives

Last night I had a mini breakdown.

I thought, and verbalized (sort of), while sobbing uncontrollably,  that I don't know why I was allowed to survive DRESS Syndrome, only to be given all of the issues I'm going through now and that I was so tired of dealing with it.

After a few hours of on and off crying.  I went to sleep.

This morning I woke up with a new perspective, perhaps because it's Thanksgiving (well technically tomorrow is, but a lot of people celebrate today).

One thing I've struggled with is adding another year to my program.  I keep telling myself I'm okay with it, I keep telling other people I am okay with it.  But I wasn't.   I think maybe I am now.

I recognize that I could not have completed 6 courses this semester... or maybe I could have, but not with good marks.  I don't have the energy, I have too many doctor's appointments, there's too much that's still wrong.

I also realized that if I HAD gone with the 6 courses, I would not have taken Disability Studies, which I absolutely love, and I think will benefit me both personally, and academically in the future.  It's giving me a lot of new perspectives on a lot of things, especially disabilities.   It's kind of funny (not in a ha-ha way),  I haven't even really thought about the fact I have MS in the past couple of months.  Even when my hands bother me I associate it with neuralgia, not with MS (although it's the MS that causes the neuralgia).

I also get to take other cool courses, there's a Distance Ed course at Laurentian that I want to take, that I can take next semester if I want, and get credit for.   There's the possibility of a Gender & Sexuality course that I really want to take being offered next year.

If I'm going to be here for another year, I want to expand my knowledge and gain more perspective... I want to build the strongest base for going into my Masters possible, but I also want to learn for me... because I don't know what the future holds, so I want to be happy right now.

It's sometimes hard to be happy, especially when it seems like everything is out to make your life difficult, when there's rocky roads all over the place... It is reinforcing the fact that I actively do things in life that make me happy.  I need to not do things in life that stress me out.

I'm thankful for the mini-breakdown.  I'm thankful that it didn't overwhelm me or break me completely, and I'm thankful that I've gained a new perspective, and reinforced some previous thoughts.

More side effects, more drugs

8.

8 is the number of things I have to take to counteract the side effects of the prednisone.


-NPH and Novorapid to help with the steroid induced diabetes
-Tecta to help with the heartburn because the prednisone is eating my stomach
-Fosamax to help prevent osteoporosis because prednisone hates bones
-Calcium to help prevent osteoporosis
-Vitamin D (okay I'm supposed to take this anyway, but it gets mentioned because I was told to take it) to help with the Calcium absorption.
-Hydroxyzine to help me sleep because prednisone makes that difficult (I've been able to cut back on this one as I've been tapering.)

and now ramipril.

Since I dropped to 40mg/day I've been having weird dizzy spells.  I know that decreasing prednisone can cause a drop in blood pressure (I was warned if I ever am sick and can't keep it down to go to the hospital immediately and get IV because it's dangerous to stop cold turkey because it can severely drop your BP).  My blood sugars were fine, so I thought, maybe since I normally have normal-low blood pressure, it dropped.   I had the nurse at my school check it.

170/98.   That is the OPPOSITE of low.   Especially since 3 weeks ago it was 110/70 (and has consistently been around that for the past two months... I think I had a 125 over something once...)

The nurse made me go to the emergency room.  I was in and out in under 4 hour which was surprising, and nice, since I did not want to go.   Urine test, ECG,  bloodwork.  The doctor said it's common for people on prednisone to get high blood pressure, and gave me a prescription for low dose ramipril.

It's kind of funny (not in a ha-ha way) that I wonder which is worse, (other than the potential for death part of DRESS Syndrome),  DRESS or prednisone side effects.  Diabetes, high BP and osteoporosis are pretty severe side effects.  Although elevate liver enzymes are pretty severe too, and the rash was HORRIBLE. (Now I'm itchy from prednisone giving my extremely dry skin... so apparently I'm destined to spend half a year being itchy)

In Honour of it being Thanksgiving weekend,  I am going to look at what I'm thankful for

-I am thankful to be alive.
-I am thankful to have people who love and support me
-I am thankful to live in a country with access to universal health care.  Where I never have to question if I can afford to seek help. I think that the 20% mortality rate for DRESS is influenced by people who live in countries without access.
-I am thankful my Ontario provincial insurance covers me while I'm in PEI
-I am thankful I am well enough to continue my post secondary education, even if it's a lower load.
-I am thankful to live somewhere where I don't have to worry about air strikes or being bombed.
-I am thankful to not currently have food insecurity.

Happy Thanksgiving to all my fellow Canadians.  Enjoy the harvest.

The Guilt

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.

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.

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...

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)

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 

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.

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.

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.

It's okay when it's not okay...

It's okay to cry.

When life throws punch after punch and then kicks you when you're down.  It's okay to cry about it. It's okay to feel fed up, and stressed out.  It's okay to not know if you have the power or the energy to go on.

It's okay to spend a day, or two, in bed, doing nothing, hiding from the world.

But then you get back up, you get help if you need it, you learn to be okay with the bad days, because you survived them.   I saw a meme recently that said "You have survived 100% of your worst days"  and it's true... it doesn't matter what you're battling, you have survived and it's amazing that you've done so.

John Underhay (PEI Curmudgeon Blog)  spoke at my university during mental health week and he said something along the lines of it being okay for depression to make you hide from the world for a couple days... but you can't let it go beyond that, and I've been thinking about that lately.

I've also been blaming the prednisone for all my crying (because it's responsible for most of my rage)... but I think maybe it's not entirely responsible for all the crying.  I think it makes the bad seem worse... but life is really fucked up right now, and full of uncertainty, and that in itself is enough to warrant some mini breakdowns... maybe not so much the crying pretty much all day that happened on Friday, but definitely the moments of feeling emotionally, physically and spiritually drained.  The moments of not knowing if I have the energy to go on, to fight. There are times when I don't want to fight... the pure exhaustion of it all.

Cognitive vs. Emotional.   Emotionally I feel like doing nothing, Cognitively I know I should do things that I enjoy... and if I can get my cognitive side to win the battle, afterwards I do feel a bit better emotionally.   I still can't trust my emotions.  It sucks.

Today I met with my dermatologist... I knew one of three things was going to happen:

-My liver enzymes would be good, and I could drop to a lower dose of prednisone (start to wean).
-Everything would just stay the same
-My liver enzymes would be horrible, and I would have to go on IV steroids.

I was hoping for the first one... I was *supposed* to start weaning after I got out of the hospital... but my body doesn't seem to be doing this whole healing thing right, so I haven't weaned.

It's been a month.

A month on high doses of steroids.   A month of my body being "in shock", a month of this stupid DRESS syndrome (well... more than a month, they just didn't know it at that time).

The second one won... My liver enzymes are high, but not too high.  High enough that they can't risk dropping my dose, for fear that I might flare up again... not high enough that I have to go on IV steroids.   They're a little bit higher than they were when I was let out of the hospital... A MONTH AGO (They've gone way up, and down, and back up.. and down since then.)

So now I remain stagnant.  Nothing changes.  I have no idea when I'll begin to wean of the steroids... which is going to be something like a three month process... at the rate I'm going I have a feeling it will be longer.

It's really hard to see the light at the end of the tunnel when it keeps getting further away.

I met with my counsellor today too, and he is helping me realize that I can let the fear of the unknown overwhelm me, or I can acknowledge it, and make changes in my life that help me deal with it.

I keep telling myself there's nothing I can do except make sure I take care of myself.  It is actually making me realize how much more I actually need to take care of myself, my body, my mind, my spirit.   My body is busy fighting something that tried to kill me, and it has taken a few weeks for me to realize instead of trying to ignore that fact, I should treat my body like it's trying its best to survive and thrive... and it can't win if I'm treating it like crap.

It's okay to cry, to get mad about the situation... but it's important to realize that I have no control over the situation (hard for a Type A personality who is used to being in control), but I do have control over how I treat myself, and I can make things harder for my body, or I can try and make things easier.

Easier seems so hard though.

What do you do for you?

What do you do for you?

I was asked this question by a nurse... and it stumped me.

All of the things that I listed in my head... were not what she was asking.

What do I do for me?

Oh well, I'm the Accessibility Rep for the Student Union... I really enjoy it because I get to help other students...

I'm a Campus Life Advisor... I really enjoy it because I get to help other students...

I study Social Psychology, I really enjoy it because I get to learn about how peoples thoughts, opinions and actions impact society.

I volunteer at, with... so many things.

Enjoying something, and doing something for yourself are not the same things.

I know she wanted me to say things like "Oh I enjoy reading..." (Which I do... but I never seem to be able to have the time).

I had this epiphany that I really need to start doing things for me.  I need to devote time to myself, to getting better, to healing, to not being stressed.

The most important thing I have in life, is my life... and I need to stop putting my health on the back burner.  I need to stop pretending that I'm okay, and that everything is just going to be okay on its own.  It's not.   I can't be on high doses of steroids, battling a syndrome that has a 20% mortality rate, dealing with all the side effects... and just pretend like I can go on living life the way I was before.   That's not my life anymore, at least not for now.

There is a selfish aspect to what I do... I enjoy helping people, it makes me feel happy, and useful... but it also sometimes makes me feel stressed because people rely on me and it makes it hard to say no, or  "I can't".     People take for granted I always say yes, and as I've started to say no to things, I've noticed the disappointment, and I feel guilty.

The next few months are terrifying, and I need to start being selfish. I need to reduce my stress and focus on my health.... I need to have periods of my day where I do nothing... I can use those times when I need naps after not sleeping for days, or you know... homework.

What do I do for me?  Not a heck of a lot... but I'm going to start.

When you can't trust your emotions.

I spent hours yesterday crying.    At home, in my car, at work.

I feel like I'm on the verge of breaking.   All the "you are strong, you can do this" doesn't get rid of the fear and uncertainty.  It doesn't mean much when you don't know if you believe it.

I recognize that being on high doses of steroids for a month is playing a wicked game with my emotions.  I recognize when I go through periods where I can't sleep, that the exhaustion that overtakes my body, affects my emotional stability.   

I know, logically, that the thoughts that pop into my head, that scare me, are not my normal thoughts.  I've been able to cast them aside, but I worry one day I won't. I can't trust my emotions and that scares me. 

I hate the person that I have become.  I hate the anger, and the fear that seems to control my life now. I hate that the littlest things make me so mad, and I know that it doesn't make sense, but I can't stop it.  I hate how I treat people, I hate how uncertain I am about life and the future.  I hate that I can't do everything I did before, and I hate that I feel like I'm letting people down. 

I keep telling myself I just need to take it one day at a time, in three months it will all be over... except I don't even know if that's true, and I don't know what the next three months hold.  There is no "getting better" each day.  It's a maze of navigation that I have no control over, I move forward, move backwards... tossed around.

I looked at my schedule for the next semester, it is greatly reduced from everything I normally do... and I still had a moment of panic.

I can't drop everything though. I need some sense of normalcy to keep me sane.   I just need to figure out the new balance for that.  

I hate that I feel selfish, that I'm racked with guilt, for saying no to things, for trying to take care of myself.   I am not good at prioritizing myself. 

It took me a long time to learn to love myself... and I hate that I currently hate myself.

I hate all the hate I feel.  I am not normally a hateful person. 

Bruises, Blood work and changes

So it's official (I guess).

I e-mailed the registrar and asked to cancel my application to graduate this year. Two more years to graduate.  A lot of people I know who have done their Honours have taken 5 years anyway, so that makes me feel a bit better.

I also did a bit of a shake up of what I'm going to be taking next year.

There was some concern with my taking one of the classes, because it is a once a week, 3 hour class, that relies heavily on participation, and if I end up back in the hospital, even for a week, that's a big hit.  It's also taught by a sessional, so if I need a medical extension to finish it, it complicates things a bit (not impossible) but it seems like a lot of unknowns and stress.   There is a course that I originally was super excited to take, that I decided not to take for a bunch of reason, but it actually is the perfect fit now.  It is taught by a prof I know and love, I know what's expected of me for the course because I've taken 300 level courses from her before.  It does have participation marks, but there's a bit more flexibility potentially, since it's a bigger class.    It also is directly after the only other in class course I'm going to be taking next semester (I'll be doing my Honours as well which is worth 2 course credits per semester).

What inspired this random change?  I'm kind of getting worse.  I have a feeling there's another round of IV steroids in my near future (I got blood work done Thursday, I see the dermatologist again on Monday and it depends what the blood work says, what happens).   From what I've read and been told, most people wean off of steroids between 6 weeks and 2 month after getting DRESS syndrome.   I'm actually on a higher dose now than I was when I left the hospital (I guess I *kind of* weaned because I went back on IV and then back on oral, and the IV to oral was a wean... except it caused me to look like a chipmunk now with my round, swollen, rashy face :(

I kind of prefer the IV steroids.   As much as it sucks to have an IV, and they make it difficult for me to sleep at night, and even more hungry than the oral do... I feel better physically... my immune system is going insane right now, and the IV steroids calm it down (well... shut it down I guess).

I made a comment in the MSPals group about how it sucks that you can't just stay on IV steroids.  A bunch of people told me that they've been in IV steroids (every few weeks or so) for years.  There's something about that that reassures me a bit.  It's not ideal, it's not good for your body (although if you look at the immune suppression steroids do versus some of the DMD that people with MS get put on... I'd kind of prefer the steroids)

I had a bit of a melt down today.  My partner asked me how I was feeling (for like... the 8th time, because I have been feeling really crappy all day), and I lost it and told him to stop asking me because it reminds me how shitty I feel, and then I cried.    I know he's just concerned.  I'm concerned.

I've been getting a lot of random bruise (all over my thighs and legs mostly).  I don't know where they came from.  I've also noticed my bruises are taking long to heal.  I got blood work from my arm a week ago last Wednesday, and it still has quite a nasty bruise on it.  It's starting to fade though.

I noticed on my recent blood work they're doing PT/INR (which measures blood coagulation) as well now (it used to just be a whole bunch of liver tests).  I haven't mentioned the bruises, so I'm guessing it's something to do with the steroids.   It will be interesting to see the results on Monday.

Your body is in shock

I refuse to acknowledge a "re-flare up" as a set back.

I was told it was likely every time I weaned that my body would get angry.

Saturday I did my last dose of IV steroids and went to 120mg/day of prednisone starting Sunday.

Sunday night I got a bit of a rash on my face

Monday my face got very bumpy

Today it was bumpy and itchy.

At least they aren't pustules.

I saw the dermatologist today and she said it was a re-flare because of the weaning and that it was likely to happen every time I wean, and that I would need to be on steroids for several months for the weaning process.

Several.  It went from "a couple" (two) to several... which means... three? Pretty much my entire first semester of school.

I had relegated myself to only working (15hrs/week) and going to school next year.   6 classes first semester, 4 second.  Including my Honours.   I would also need to write my GRE and do Grad school applications first semester.  No extracurricular activities.

After talking to the doctors yesterday and today... that may be too much.

My Honours supervisor suggested I take 2 years to finish school instead of 1.  Mostly for my health... I can see the benefits for my Honours as well.

Then the doctor said something that kind of scared me (she's pretty good at that).

"Your body is in a state of shock" as long as I'm on these steroids.

I was feeling all bad for my liver and my pancreas... but essentially it's my entire body.
Had I actually thought about it, it would make sense.  Even just looking at my symptoms-  my body is dealing with a full body rash, a hugely suppressed immune system, high liver enzymes, blood sugar issues (and while my pancreas is fine, going from 5mmol in the morning up to 14, 18 in the evening when the steroids are full swing, and then back to 5/6 the next morning is a pretty wild rollercoaster ride of glucose).   The sugar issue is starting to get better (thanks NPH).  I'm topping out around 16 instead of 23 now.

I am really good at stressing myself out... taking on too much, wanting to do too much.  I understand from a psychological perspective that part of it is because I feel since I have MS, I should do everything I can while I can because one day I may not be able to... but am I doing it at an expense to my body?  My health?

That realization came when I acknowledged that I went almost 5 years without a relapse... but have had 3 in the past 2 years.  What was I doing those 5 years?  Some college, working, enjoying life, taking vacations to Cuba for 2 weeks a year, taking care of myself... Not stressing.  I didn't have financial stress... I only had a bit of work stress.  No school stress.

Now I have financial stress, school stress, sometimes work stress, feeling overwhelmed stress...

Stress isn't good for MS... it's definitely not good for a body that is in a constant state of shock I'm sure. :(

The idea of taking 2 years to finish is difficult for me to wrap my head around, which is funny because up until earlier this year I had PLANNED on it taking 5 years for me to complete my degree... until I realized I could do it in 4.  If I can do it in 4, why take 5?

Except that the idea that I could end up back in the hospital at any point during the next few months, makes the idea of taking on 6 courses a bit terrifying (They don't have wifi in the hospital, how would I do homework?).


I'm also a mature student... and I'm already going to be 35 when I'm done my PhD (if I get into grad school right away).  I try to tell myself 36 isn't much different than 35... but it's a whole extra year.  An extra year in my undergrad.  I just want to do research.  Also it's another year of student debt.

However, in my final year I would only need to take 2 courses each semester, would be considered full time (yay health insurance) but could also work closer to full time hours, which means saving up for the move to grad school.

My partner told me to make a pro-con list.   I hate that the only things on my con list are "A whole extra year" and "I'm getting older".    There are a lot of pros.

I have a really hard time putting my health first.  I don't know why.  It's a constant issue for me.  I want to be "normal".  I acknowledge my normal is not the same normal as other people... but even now... I just want my normal.

4 courses first semester (2 would be my Honours), 4 courses second semester (2 would be my Honours), and then 2 and 2 the following year.

There is a small part of me that is also not really ready to leave my friends.  Which is a bit dumb.  Education/career/livelihood should come first, but I value the relationships I have here.  They aren't superficial, they are meaningful and I'm a better person for knowing the people that I do, and for having a relationship with them.

If I prioritize my health... I think that means I'm looking at 2 years.   Convincing myself that's what I need to do is something else though.  I'm meeting with my academic advisor and I sent an e-mail to my neurologist.   I will see what they say.  I want as much input as possible before I make a decision.

I have to get bloodwork done twice a week, I thought it would only be once a week. No such luck.  I'm running out of unbruised veins :S  I continue to see the dermatologist once week.  She is really lovely.   The Internal Medicine doctor is really awesome too.  I am glad that I have really great doctors looking after me... and the awesome nurses at the diabetes clinic.

Stay Healthy...

Such a pretty name for such a horrible thing.

It was my fifth night in the hospital.

It was the night that I almost gave up... and I was okay with it.

Two weeks of throwing up most of the time.  Nothing helped.  They pumped me full of four different kinds of anti-nauseants and the most I could hope for was a few hours of peace when they were all working at their peak.  Then back to the throwing up.  These were medications they gave to people on chemo... and they were doing nothing for me.

I remember the moment when I couldn't do it anymore.   It was 3am.  I had blown my IV.  I had 3 nurses desperately trying to find a vein to put another one in, but with no luck.  I got IM and SubQ shots of the drugs.  I sat straddled on my bed in the hospital, silver bowl in front of me as I heaved over and over again, violently. My hands a death grip on the bottom of the bed.  

I remember saying the words.

I can't do this anymore.

I remember the reassurance of the nurses.  Promising me in the morning the doctor would see me, they would figure something out. Four hours I had to get through, just four hours. I was strong, I could do this.  I knew they knew I didn't believe them.

My face was swollen, my eyes almost shut.  Every single pore on my face, neck, chest and upper back was a pustule.  I had a rash all over my body.  It came on fast.  It wasn't like this 12 hours ago.

I was exhausted.  I was tired emotionally and physically.  Tired of throwing up, tired of not sleeping, tired of not knowing.  Tired.  All I wanted to do was sleep... and if I didn't wake up... so be it.

The nurses suggested I lay down.  I wasn't really throwing up anything anyway, and it would be more comfortable.  They propped me so I had the bowl cradled in my arms, I lay on my side.  I pulled every muscle in my abdomen that night.   At around 6 a nurse came in and found a vein... in my wrist... that took an IV.  I remember just laying there watching her.  Too exhausted to move.  I have a thing about my wrists.  I don't like them being touched.  Normally the thought of an IV in one would be enough to send me into a giant freak out.   I didn't move.  I didn't care.  I was done.

Looking back that was a scary experience.  It wasn't scary at the time.  I was... calm.  I'd give everything to just be in peace.  Looking back and knowing that is what scared me.

That night changed everything though.  That rash that came up was the symptom the doctors needed to figure out what the heck was wrong with me.   DRESS Syndrome. Drug Reaction with Eosinophilia and Systemic Symptoms.  Such a pretty name for something that would mess with my life for... who knows how long.

The symptoms in the hospital confused the doctors-  I tested positive for Mono but had no normal mono symptoms.  I had high liver enzymes, Lymphadenopathy, leukocyte abnormalities,  my bloodwork showed an allergic reaction.    The rash cinched the deal.  My doctor had never seen DRESS syndrome, but the rash plus all the other symptoms, and the fact I had been on Carbamazepine for 5 weeks, it all came together (DRESS syndrome causes a reactivation of herpes viruses in your system, and will make you test positive for things you don't actually have... like Mono)

Instantly I was put on IV steroids, every 8 hours and IV pantoprazole.  

I stopped throwing up within 12 hours.

All the pustules disappeared within 48 hours.

I got to go home a week later... on oral steroids.

I still have a rash.  I still have to be on steroids.  The steroids are actually doing a number on my blood sugar, which previously had been great.  I now have steroid induced diabetes. Fun times.

My liver enzymes are also rising.   They just put me back on IV steroids.  I go for infusions 3 days in a row then I get reassessed.   It's actually kind of terrifying.  I try to be the positive, happy person I normally am, but there are moments where I am so friggen scared.  I'm sure it doesn't help that they took me off my anti-anxiety medication (they joys of having a lesion in your brain that causes anxiety- all the deep breathing and CBT in the world doesn't do a heck of a lot of good sometimes) but SSRIs can cause liver enzymes to rise, and my liver needs all the help I can get.   So I am sucking up the heart palpitations (I'm just trying to blame it on the steroids), and anxiety and... fear.  Or trying to at least.


Stay healthy... I'm trying to.