This is life with ITP.
This is life with ITP.
Scared is different from panic
Panic is unwarranted
Panic is your body misinterpreting signals
Panic is reading everything as danger
Scared is a reminder of what we have to lose
Scared is a prayer on our lips
Scared is being alive
It’s okay to be scared
Sometimes it’s even expected
Sometimes I struggle to sort out in my mind what is ‘normal’ fear and what is my panic disorder
Yesterday I felt my heart beat fast and I felt panicked
Surely it meant something was wrong
Maybe I was bleeding in my brain
Maybe I was going to feel the way I did last week
Maybe I would receive bad news
Today is different
Today I am scared that my blood levels won’t improve
Today I am scared that this could turn into something worse
Today I am scared to miss out on anymore of my life
Is another day
That I can’t be afraid of
I started to write an update as it’s been two weeks since my last infusion day…
But everything seemed so trivial when I saw it typed in front of me
There’s so much that I want to say and yet it doesn’t feel like it would amount to much
So I’ll make this brief and say the only thing I’ve really been wanting to say:
I’ve been watching TV like all day every day
The bingeing kind of TV watching
The kind I’ve been unable to do in so long
And I was scared to say this aloud or type it out
But fuck it it’s my blog after all
My eyes don’t hurt
I’ll say it again for the people at the back
MY FUCKING EYES DON’T HURT!
I can’t remember a time when they didn’t hurt
It’s been that long
How crazy is it that I can barely remember the before MS version of me
I’m not foolish enough to think this is permanent
But for now I’ll relish in this moment
Temporary and short lived or not
And if it all comes back in the blink of my eye…
‘Write. Write until it stops hurting.’
It’s been up and down
Steroids really fuck with my entire system
Most of the physical side effects have dissipated
Left over is irritability
More so than usual that is
I don’t know how last time around I spent an entire month in isolation
I’m seriously going mad inside
I’ve watched shows, played around with my hair, cleaned, planted some herbs on my terrace and slept
I’ve been thinking about what’s next with work, how the kids are doing, if this treatment will work, the upcoming Paxil withdrawal, how they really do get the caramel in the caramilk bar
And the list goes on and on and on
I’m not gonna lie
The Paxil thing has been at the forefront
I have been totally obsessing over it
But that’s another blog entry altogether
I’m trying to make it to two weeks post treatment
And then I will rejoin the world
If it’ll still have me of course
Which has always been debatable
I am the worlds worst sick person
Specifically when I’m nauseous or feel like I’m about to throw up
My anxiety spikes
I feel like I’m going to die or go crazy simultaneously
Before you rush to sympathize and reassure me that I’m not, read on
I demand Joey stay beside while I ward off the evil nauseous feelings
But not move the bed in any way
I want him to keep his hand on me in someway so I know I’m not alone
But not too firmly
Lest his touch spur the nausea
I want him to talk
But not about anything to do with food
Which for a chef is like asking a new parent to not talk about their baby
And not too loudly either
The sound waves might make me hurl
Last night, I took Gravol and Ativan
And put an ice pack on my head
The lights off
And I asked Joey to tell me a story of when he confessed his ‘like’ for me
It’s a funny story
And always makes me smile
This time didn’t disappoint either
As soon as he gets to the part where he recalls telling me all those years ago that he’s ‘been digging me as more than just a friend’
I crack up
I was still nauseous
But it was better
He reminded me of how I planted a kiss on him
And he sprinted around the neighbourhood on such a high
Than he told me how because I was vacillating between telling him I liked him and not wanting to change our friendship, he was a nervous wreck
I remember that too
I was worried that we were too different
My dark to his light
I didn’t know then how much it would matter that he was my opposite
It seems simple now
The biggest fear was that we would lose a great friendship
I didn’t know then what I could possibly be gaining
The dude that puts my socks on when I can’t
When I’m nauseous the dude who tells me it’ll pass
Gets me ice packs
Regales me with stories from the past
Tries his hardest to not move the bed (which if you know him, you know is nearly impossible)
So yeah I may just be the world worst sick person
But who fucking cares if the one person I want by my side, can withstand the bumpy (read: nauseous) ride with me?
It’s a rare time when I don’t lay in bed tossing and turning thinking things over
Like why my first grade teacher said I was too quiet
Or why I have a phobia of blood
But this week has been different
I fall into these really deep sleeps where I wake up feeling like my body is being regenerated
No single thought is tossed around in my brain for an unnecessary amount of time
It’s kind of an awesome feeling
It makes me feel refreshed
I’ve had some negative side effects mostly from the steroids
I swear the way they can make the most mundane food taste gourmet is amazing 😍
And there is NO hunger like a steroid hunger 🐷
But mostly manageable through medications
I keep trying to remind myself that it’s totally okay if all I did today was shower or sleep
Then my mind tries to tell me that it’s not normal to sleep all day
But when the hell has my mind ever been right anyway?
And when have I ever cared about things being normal?
While I can’t say for certain one way or another where the storm of powerful emotions is coming from
Is it the high dose steroids, the cocktail combo of everything else and now the drastic withdrawal?
A culmination of the last several months, much of which was unpleasant at best?
I guess it doesn’t even matter
What does matter, is that like Piglet, I’ve noticed that my heart can carry an enormous amount of gratitude
And I don’t think gratitude is meant to kept bottled up. It’s like having a present and never giving it to the intended recipient.
I want to lay out some honest gratitudes in a way that doesn’t trivialize then into mere platitudes So bear with me while I navigate these murky waters
In can be hard for people drowning to see the good, the things to be grateful for
But I’m going to try
I am grateful for:
And who in their right mind would want that?
Why bother sitting in the sun for hours when you could just straightline 1000s of mgs of steroids to get that same sun burned look. 🤦🏻♀️😡😤It’s funny how the steroids are to help our bodies deal with the Lemtrada infusion but also seem to deliver the most obvious side effects. I’m now laying my head on an ice pack in a air conditioned room with a fan on. So essentially it’s the equivalent of hot humid Toronto day.Send cold provisions. ❄️❄️❄️
Been in bed for a few hours and feeling drained to the bone but I wanted to jot some notes down.
Today was day 3 of Round 2 and the end of the treatment cycle. Hoping I will be among the many who haven’t needed a third cycle.
Today was comparatively easier than the last two days and had my awesome zen and calm sister by my side today who was a super caretaker.
I had one major spike with blood pressure where it went up to 160something over 111. But managed to make its way back into safer territory.
I was nicely drugged up for most of the morning into the early afternoon and felt little more than the Sahara desert of dry mouth and throat.
While doing my infusion I met a fellow MSer who was getting Tysabri treatment (which I was ineligible for due to previous exposure to a virus). This Misfit of a warrior has been battling MS since she was 17 and has been through her hurdle of using a walker and I’m sure much more but has since done well with Tysabri. Wishing her and everyone else on this weird fucked up ride of MS, nothing but strength, courage and good vibes.
My nurse Christine today was excellent as were the other two and I even got to see Nurse Amanda who rocks!
I hope this made some sense as I’m pretty doped up at the moment. 🤤
I won’t even begin to describe how many pics had to be taken of me throwing up the round 2 day 3 hands. I just couldn’t get it right! You’re welcome world!
But I just wanted to say I fucking did it! I did it! I can’t believe I did it and yet here I am with the bruises and soreness to prove it.
All of you in real life and in the cyber world have made my journey somehow a little easier, a little less lonely and have given me a whole lot of support. Much love and respect to you all.
Although there is a slight possibility that this may be the drugs speaking or just allowing me to be more honest, either way take it while you can. 😂
Day 3 has made for an achey, tired and woozy little warrior.
Who is off to bed in hopes of deep blissed out sleep and with whispers of hope on her tongue for a better tomorrow.
Super sleepy. Another great nurse, shout out to Matthew for dealing with me all day. Today the moms came with and not only kept me company but of course every other patient who came in for their much shorter infusions.
No major problems. Some leg pain, nausea and head ache. No appetite and extremely dry mouth and throat (weed smokers you know nothing until you’ve done this treatment).
PS I slept like a blissed out baby last night and am hoping the same drug cocktail would do the trick
PPS I heard from my employer, and I refuse to respond. She wrote some nonsense about not having had the chance to draft a confirmation of medical leave letter (that I took 3 weeks ago, but I’m bad at my job right). And wanting me to give them their phone like I’m gonna be doing that during this time. Pfftt 😤
Day 2 of Round 2 is done ✔️
1 more day to go 🙌🏼✊🏼🤞