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. 

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 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.

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.