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.

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

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.

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.

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.