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. 

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

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.

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.