A look on the (very) (red) bright side

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. ❄️❄️❄️

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No pain

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.

🙌🏼✊🏼🤞✌️

Day 2 got me like…

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 🙌🏼✊🏼🤞

“In the midst of winter, I found there was, within me, an invincible summer’ -A.C

Round 2, Day 1 Down of Lemtrada treatment

The day got off to a rocky start as I woke up at the crack of my ass (aka 4am)

After taking the dose of Prednisone, I started experiencing intense leg cramps or spasms

Aside from that, Joey was my first guest to join me today and we headed out to the clinic around 745AM

I was disappointed to find that Sharmela was off on mat leave but was sooo grateful to have the awesome Amanda in her place

Amanda was a straight shooter and her calm demeanour aided my own to chill the fuck out

There were a few glitches in the beginning with a faulty line in that just spurted some fluid and has left a grotesque and slightly painful bump on my hand

Second shot went in fine

Did the usual Solumedrol dose

Yippee more steroids

And then an hour later onto Lemtrada which is delivered intravenously over 4 hours

Lunch was a tough sell and my appetite was wonky at best

There were a few scares

Namely my high blood pressure and accelerated heart beat

And the muscle cramping in my legs was at some points unbearable

But my good nurse doped me up and got me through it

We stayed for the roughly 2 hour observation time afterwards to ensure no major reactions occur

And thankfully they didn’t

Amanda wrapped me up and left the port in for easy access (😬) tomorrow morning

But all I feel is like the warrior I am wrapped up and ready for more battle

We got home around 530PM this evening

It was a long ass day and we were both proud of ourselves for having pre made dinners to be heated up over these next few days

I’ve now eaten a bit more at dinner taken more antivirals and can honestly say I rocked the fucking shit out of this first day

I was tired, cranky and spastic and I still made it through (blood splatters, trapped IV tube blood and all)

Yay fucking me

I want to leap on trees and scale gates and scream so loud that I lose my voice because I discovered something in me

Maybe only a mystery to me

But

I know I can fucking do this

I’m going to take more drugs cause I ain’t no hero and like Samuel L Jackson urges your damn kids to do, I’m gonna take his advice and ‘go the fuck to sleep’

👊✊🏼✌️

Someone Like Me

One more day to go

Tomorrow is my first day of Round 2 Lemtrada treatment

Today is my prep day

I am prepping meals and snacks for the infusion days

And dinner meals for the week

I need to take the dreaded Prednisone this afternoon to help my body get ready for the infusion

I have a roster of family coming with me on each of the three days

I feel ready

More than that

I want it to be done already

It’s kind of like putting your life on hold for a minimum for one year

With the possibility of extending that

This year has not been kind to me

And I’ve had difficulty in dealing with everything from work to my health to my finances and personal life

What doesn’t kill you…right?

Having said that I do feel better prepared for around 2

I know what to expect and what not to expect

And I now know that nothing good ever comes without sacrifice

So if it means another year of my life on hold to make the next several years hopefully better…

So be it

I have discovered I am the type of person who needs something to look forward to

A purpose

A goal

A reward

I find it motivating and challenging and I like overcoming challenges

I thought it would be helpful to me if I made up a list of things I am looking forward to

It makes this more tangible

And it makes this feel worth it

Here goes:

  • I want to go to Salem for Halloween this October
  • I want to go to a beach somewhere this summer (sorry Ontario, with an ocean)
  • I want to plan a trip to a place I’ve never been like Ireland or Portugal within the next 6-9 months
  • I want to find a job where I feel valued and where I feel like I’m doing something goodI want to become reacquainted with the city I love by exploring different neighbourhoods or rediscovering old neighbourhoods
  • I want to take up photography as a hobby and incorporate that into this blog
  • I want to make this blog into something…more
  • I want to see and spend time with the people I love and who make me smileI want to spend my nights sharing stories with J. where we can laugh and look forward to the future that is open for usI want to make my body and mind healthy for the first timeI want to remove unhealthy toxins from my life and body (looking atcha Paxil
  • I want to get a tattoo to immortalize this experience as is the biggest challenge I’ve ever faced

And this last one, is probably the most difficult and simultaneously the most important one to me.

  • I want to feel at peace in my soul. In my mind and in my body. I don’t expect happiness 24/7 but I want to know that it is attainable even for someone like me…

Why bother trying to write something when someone else has already written it so much more succinctly than I could ever imagine.

I don’t have any words other than this article is everything I’ve thought myself, too many times to count…

https://themighty.com/2018/04/chronic-illness-struggles/?utm_source=engagement_bar&utm_campaign=post_feed.story_card_full.mobile_fixed_engagement_bar&utm_medium=link