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.