Alone in the night

A few weeks ago I was terrified that I was going to kill myself.

I have been struggling with what I've been told is "situational depression", although it seems like it's been a long time. I've been dealing with a lot of health issues for the past year and it's occasionally taken it's toll on me.  In February of 2015 I went on citalopram after finding out that I may need to go on Tysabri, which absolutely terrified me.  The citalopram was more for the anxiety attacks I was having, but after a month of being on it I found that my stress was reduced, I felt less anxious, I worried less, and felt... happier and more optimistic.  I felt like me again.  At the end of July I had a severe reaction to another medication I was on, ended up in the hospital, and taken off all my meds (and put on prednisone and a whack of new drugs to counteract the side effects of prednisone, which was, in its defence, saving my life) You can read my other blog posts to learn more about that ordeal, but I'll fast forward to about a month and a half ago.

It was taking a lot longer to recover from the severe drug reaction. I'm still on prednisone, even though I was supposed to be off it months ago, but my body freaks out any time I taper too fast... or even what was considered a "gradual" taper, and we've had to modify it to "a really long taper".  I am so tired, and stressed out, and just... down.  I asked my Internal Medicine doctor if it was okay for me to go back on citalopram.  Since my liver enzymes seemed stable, I was given the okay.

The nausea was absolutely horrible.  I was practically bed ridden for almost a week, dealing with nausea and dizziness, even though I downed a ton of gravol. It started to get better after a week.  After a month I still would wake up around 3am nauseated.  I spoke to my pharmacist who suggested I take it in the morning instead of at night.  This made sense to me, I used to take it in the morning last year. So I started taking it in the morning... and didn't sleep.  The 3rd night, I had slept a total of maybe 4 hours at this point.  I was up most of the night.  I lay in bed and had visions of me getting up out of bed, walking to the kitchen, and slashing my wrists.  The visions were so vivid, and I felt so out of control, that I was terrified to even get out of bed to use the washroom because I thought I wouldn't be able to stop myself from walking into the kitchen.  I just lay in bed and cried for hours. The next day I spent the day in bed.  Not doing anything. I couldn't go on social media, or watch t.v., I couldn't even e-mail my prof and tell her I couldn't make it to class. I just laid there and looked at the wall for hours, sometimes drifting into short periods of sleep.

I am thankful that I was able to recognize that these were not normal thoughts for me, and I made an appointment with the doctor at the school health clinic, who is very supportive of mental health concerns. He upped my dose of citalopram, and had me take it at night again. He offered me the option to speaking with a psychiatrist as well, but I wanted to try the adjustments first. That night  slept... I woke up nauseated and had to take a gravol, but I slept most of the night.  After 5 days of not getting more than 13 hours of sleep in total, I slept.

It's about a week and a half later. I'm starting to feel okay again.  Not great... but I haven't had any of those thoughts since.  It is amazing how much your brain can mess with you when you haven't slept, it just makes everything worse.  I'm sure the prednisone hasn't helped.  I had different but equally scary thoughts when I was on high doses of it.  I remember my neurologist once telling me "if your body tells you you need to sleep, then sleep"  that's a bit hard to do as a full time student who works, and I worry about all the students out there pulling all nighters.   It isn't just bad for your physical health, it's bad for your mental health too.

Next week is Mental Health Week at UPEI... I think it's important to share experiences, so I wanted to share mine.

Practically Baby Food

So I have been having a lot, a lot, a lot, of digestion issues since the beginning of December.  At the time, the doctors thought it was viral gastroenteritis. My symptoms matched, it was going around... but it never got better.  Since I was on prednisone they figured that the 5-7 day normal period may last 2 to 3 weeks.  It is now 10 weeks. My Internal Med doctor thought it might be a pancreas issue, but I don't really have any other symptoms.  He ordered some tests though (I'm waiting for the results).

In early January I went on a "low residue diet" which actually kind of made things worse, so I was only on it for about 3 days.

Today I started, what I am not-so-lovingly referring to as "the practically baby food diet".   Easily digestible veggies, low fruit, low fat, low protein (since I have issues with protein anyway), low grains... basically I can eat the following:

I hate to say it (because I'm a foodie), but my digestion was already greatly improved today.  BLAH. After a few days I'm going to reintroduce foods back in, and see how they go.

For breakfast, I had an epic fail.  I apparently forgot that I don't really like sweet things.  I tried to make banana pancakes.   Mashed banana, egg, a bit of coconut flour... I found them really dry (I maybe shouldn't have added the flour) so I topped them with applesauce, and some cinnamon.  I ate about half and was done. The rest are currently sitting in my fridge while I figure out a solution because I hate to waste food.  I must be able to mix it or something (maybe more banana and freeze it...)

bleh. 

Lunch went WAY better.  I made risotto. Arborio rice, vegetable broth, asparagus (uh... that might not be on my list, but I had some and didn't want to waste it), topped with a bit of goat mozzarella.

so delicious and filling!

Supper was the highlight of the day.  I grated sweet potato and steamed them (they could have been steamed longer), added some mild curry spice, coconut flour, egg, and grilled them.  Topped with some probiotic active bacteria yogourt and mustard.  I have some left over for tomorrow!

I liked the ones with mustard the best.

For snacks, I made sweet potato, zucchini and goat feta muffins using banana flour.  I didn't like them warm, but absolutely love them cold.  There's only about a net of 11gr of carbs per muffin, and only 1gr of fat, and since I'm still dealing with steroid induced diabetes, it makes it a perfect snack.

 best snack ever (Banana flour is EXPENSIVE though!)

All of the ridiculousness of the past almost 7 months sometimes catches up with me.  This digestion thing just seems like something else on the long list of things I have to deal with. I try to remember that I'm alive. 20% of people who go through what I went through don't make it, I could have been that 20%. All of the crap I'm dealing with now has to be worth it, because I get to be alive. I get to go to school.  I get to study something I love, I get to work on my Honours research project that I absolutely love. I get to work, although it isn't as much as I'd like to, I get to help people. I get to connect with people.  I get to do things, even if I'm limited in the amount of things I can do. 

Sometimes life sucks. Sometimes people suck... but sometimes it's worth it to get to be alive, and do things you love, even if you can't do everything you want to. 

A little update

I haven't updated in awhile.  I'm not sure what to say.

I'm still looking at at least 4 more months before being off prednisone... but it's been "2 more months, 3 more months, blah blah blah" since August, so who knows.

I started Celexa again.  The first two weeks were absolute hell. The first week especially.  I was insanely nauseated all of the time.  Now I only get it at night, and if I take gravol at bedtime, it mostly helps.

I think I expected too much.  I wanted to feel like I felt last year on it.  I don't. I'm wondering if the fact I was also on Gabapentin for a good chunk of that time helped.  Last year it got rid of the anxiety, and dread, and I looked forward to things. Now I just feel... melancholy. Or maybe apathetic is a better term. Whichever it is, it makes it hard to get out of bed and do things. It's not depression though... well, not like I had before. Dread and anxiety about the future have turned into... complacency. So I guess we're moving in the right direction?

I went for lunch with some friends today.  It was really nice.  I didn't feel overwhelmed at all, which usually going out causes me to feel lately.  We went for a little walk downtown after and I got a smoothie at the juice place that just reopened.  It was nice to be social :)

Rice wraps are my simple love

Totally going a different direction with this post. Not having a lot of energy, sometimes makes it difficult to eat healthy.  Not being well, makes it even more important to eat healthy.

Rice paper wraps have become my go-to. They're quick, easy, delicious, and healthy.  

You can put anything in them... someone recommended peanut butter and banana to me, I haven't tried that yet because I don't know how I feel about the consistency, but I will try it eventually.

You can make cold rice wraps, hot ones, pan fried, deep fried, baked.     Cold and pan fried are what I usually eat.

 I am having difficulty with digestion, so have to be careful with raw veggies, but there are lots of cooked ingredients that taste amazing in them.

 Some of my favourite ingredients are sweet potato, onion, the veggies that are in broccoli slaw (PC is my favourite), mushrooms, tofu, eggplant, avocado, black bean noodles... I tried edamame, it was okay, but I wasn't fond of the texture of them inside.  They were great on their own with a bit of sriracha though!

My spiralizer (which I bought for $25 at Superstore before Christmas, and they now have on sale for around $13)  makes onions, eggplant and sweet potato easy to prep for cooking... although fat sweet potatoes are more difficult to spiralize than the thin long ones. 

I choose the veggies I want, sautée or steam them, and then get the rice paper (bánh tráng) ready.  I can only find square ones at Superstore, and I find them really flimsy.  They don't work that great with my rice paper tray (see: http://www.cuisinivity.com/goodstuff/2012/ricepapertray.php minus the stand) either.  I will stick to circular ones from Asian grocery stores in the future, but the ones Superstore sells when in a pinch (They're okay if you don't want to cook them).

You can see how much nicer the circular ones (on the left) turn out when pan fried, versus the square ones (on the right) which liked to fall apart once they hit the heat :( 

My favourite dipping sauce for them is a combination of peanut butter, coconut almond milk (Almond Breeze unsweetened Almond Coconut Milk is my normal choice, because I also love it in my tea), sriracha, a splash of soy sauce and grated ginger.   I'll sometimes do a splash of orange juice, or rice vinegar if I'm craving a bit of zing.  It's also really good with hoisin, which is one of my guilty pleasures in life... but I can't justify the sugar in hoisin since I'm dealing with steroid induce diabetes... thanks prednisone. If you can eat it, I recommend adding it!  I also once substituted tahini for the peanut butter, because I had it on hand.  It was fantastic, although a pricier option.

 I mix it to a creamy consistency, but add more liquid if you prefer it watery. If I'm taking the wraps with me to school or work for lunch, I'll make the sauce thicker, and put it inside the wraps instead of a dip so I don't have such a messy lunch. 

When choosing ingredients for the inside, something with a crunch gives it a little bit extra something.  Nuts, seeds, shredded carrot, or, I used to not cook the broccoli slaw, when I could eat raw veggies, and it was great. The mix in consistencies is lovely. 

Pinterest is full of recipes for rice paper wraps. 

Sometimes you need to appreciate the simple things in life.  I've had a hard time doing that over the past few months, with all the bad things that have gone on.  Having something delicious, affordable and easy to make, is one of the simple things I do appreciate. 

Privilege

I've been thinking a lot about privilege lately.

While there are aspects of my life that would be classified as not having privilege-  I have a disability/chronic illness, I'm female, I've been sexually abused, I am considered to be low income, there are a lot of aspects of my life, for which I have privilege.  I think it is important to acknowledge, and even be grateful... or respectful, of the privilege you're afforded.

• I am able to attend post-secondary school
• I am able to receive accommodations that allow me to be successful in post-secondary school
• If I ever can't afford food, I have access to my campus food bank
• I have access to universal health care.  I do not have to worry about not being able to afford medical attention that I need.
• I have insurance that helps cover the cost of my medications.
• If I ever can't afford my medication, my province will pay for it.
• I'm white
• I live in Canada
• I live in a well populated part of Canada
• I am from the wealthiest province, based on total GDP and per capita GDP.
• I am from a province that has an unemployment rate below the national average
• My ancestors immigrated here from Belgium and Germany in the late 1800s/early 1900s.  My ancestors never had to experience War, unless they signed up for it.
• I have 4 specialist doctors, a general practitioner, and 3 nurses that follow my health.
• I have a place to live.
• I have people who love me, and care about me.

I am sure I have a lot of other privilege.  Acknowledging your own privilege helps you realize the ways in which you are fortunate, but also can help you realize ways in which to support others who do not share some of your privilege. 

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.