The Ugly Side Of Recovery

I’m one year and 3 months post round 2 of Lemtrada (the immunosuppressive treatment I underwent for MS).

This was probably the biggest and scariest thing I’ve done in my life

There was caution and risk involved

But I did it anyway

Because my desire to be healthy outweighed my fear

That doesn’t happen often with me

Countless times, I’ve allowed my fear to be in control

To sit in the drivers seat

To call the shots

For whatever reason

That time

I just didn’t

One of the possible side effects of Lemtrada treatment is:

‘Immune thrombocytopenic purpura (ITP), a condition of reduced platelet counts in your blood that can cause severe bleeding that may cause life‑threatening problems. Call your healthcare provider right away if you have any of the following symptoms: easy bruising; bleeding from a cut that is hard to stop; coughing up blood; heavier menstrual periods than normal; bleeding from your gums or nose that is new or takes longer than usual to stop; small, scattered spots on your skin that are red, pink, or purple’

I think it’s something like 2% of Lemtrada patients can end up with it

Well I recently went away and while on vacation I noticed huge unexplained bruises.

Then came bloody stool

Some red spots

And a whole lot of anxiety and fatigue

Needless to say

My trip was a bit of a bust

Upon return I reached out to my Lemtrada nurse to explain what I was experiencing and she told me to get my bloodwork done

I did

And my platelets were 53

Normal platelet count is between 150-200

I really had to restrain myself from googling the fuck out of this

I sent my nurse a copy of the lab work

And bright and early this morning she called me

Seeing her name on my phone

I knew it wasn’t going to be a friendly call

She urged me to go to emerge at St. Mike’s ASAP

She was amazing at calming my already sensitized nerves down

So I got my people ready and we went

At emerge and after having to explain Lemtrada repeatedly, I had more bloodwork done and a rectal exam (that was fun)

After lots of waiting

Worst case scenarios playing in my head

And my constant companion of anxiety

My results were back

Platelets up to 87!

Not in the clear but an obvious improvement

With cautions about new bruising or headaches

To return to the emerge immediately

A little bit of good old fashioned fear: you could experience bleeding in your brain

Another blood test on the horizon

And an appointment with a hematologist

I’m headed home

Of course I’m scared

Because yet again

There is uncertainty

For example, what caused this all of a sudden?

What if it comes back?

What if I fall or cut myself?

What if I die?

Uncertainty and anxiety are like yin yang

They feed off each other

And it’s so fucking easy to slip into my old patterns

Fear, panic, sadness, wallowing

Then what?

It doesn’t change my potential outcome

But it does make this whole process that much harder

And why on earth would I ever want to make things harder for myself?

I refuse to allow this to make me a victim

Nope

Today I will do something that I don’t often do

Something my sister said to me

I will deal with this with a grace I don’t often possess

With strength and determination that I’ve not often felt

Gratitude that I often neglect

And I’ll just keep going

Because anything less isn’t an option

Not today anyway

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5 thoughts on “The Ugly Side Of Recovery”

  1. “I’ll deal with this with a grace I don’t often possess”. There is no other way! What other choice do you have? I’m glad you went to the ER, I am glad you are being monitored…. I hope this is just a small speed bump in your journey

    Liked by 1 person

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