Thursday Hijinx 

Well, it was that time again today:

Are you as tired of this view as I am?

Today was rheumatology. For some reason, it is neurology that diagnosis and manages a lot of my care, but rheumatology administers and tracks the effects of the chemo. They (rheum and neuro) have to talk, collaborate, and agree on treatment for me.

Me being me.

Rheumatology, while quite lovely doctors, are always a wee bit (okay a lot) more negative than neuro. While neurology says, “You’re young! You’ll rebuild neuro pathways! It will just take time. Give it time. You’ll have good days and bad, but you’re trend is to get better. We expect, with your age, you’ll make a near full recovery.”

I see this tunnel far too often.

Rheumatology says, “Well, you know your MRI showed a LOT of ‘spots’ right in your brainstem. You can’t rebuild those neurons. You may never make a recovery. You will always have symptoms, they will just have to be managed with therapy. We need to do another Lumbar Puncture (Dang It!!), and see if there is further damage and inflammation. What you have is so rare, we really don’t know how to treat it. We’re just doing what we hope is going to maybe work. Here …. We need more blood from you before you go.”

Forget the band aids! Pressure-wrap that little needle stick!!

So, while it was a good visit, in that it was confirmed I show no knew strokes on the MRI, it was disheartening, as rheumatology always is. They give me not much hope, ever. Like I said, the doctors I see are great, they just give me no hope, and hope, I believe, is my best bet right now.

They say selfies from a high angle make you look thin. I got as high as I could!!

So …. I continue on with therapy (That mean three more hours of car riding tomorrow; back to the same place. Poor J. Poor Aunt Linda who picks up my kids!!!) weekly. I’m supposed to do a water workout at the YMCA once a week. I go back to chemo Nov 11, followed by a neurology appointment, and then one month later, rheumatology again. But, let us not forget the 4th chemo that will happen around December 11. 

Whatevs. I’m just along for the ride.

Today’s adventure took a whopping 6 hours from leaving to returning. That was for one appointment. That was no major tests, and just one clinic. Feel my pain a bit?

Poor, poor J. Has to play chauffeur, and caretaker.
We pay ridiculous amounts for parking, not to mention gas, each time.

At least I get to sleep in my own bed tonight.

And get to drink my own coffee.

And my family is safe.

Cheeky monkeys

And I get to be here with them to see it all, even if I am a bit broken. Even if the money is quickly running out. Even if I have to have a million more painful test. I’ll get through it. 

Yeah, I totally stole this. Fitting though!

Goodnight. We’ll talk more later! Remember, you have value! You’re here for a reason. You may not understand that reason, but I promise you, there is a greater purpose. I love you all! Thank you for being you! 

Good night!

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  1. Mandy u are amazing!
    I’ve been there too many times w/countless docs trying to steal away my hope also. But here I am ten plus years out of my acquired brain injury that I can thankfully say ur Neuro is correct! When it first happened I cldnt read, write or process let alone communicate like I had before.
    Yes, I still have very bad days, buuuut my brain built other pathways n I’m able to do so much more than I was….no matter where the damage is, no mAtter what the docs may have said. I truly believe our Lord has the final say, n I so thank Him for that!!!
    I believe ur gonna get through this n become stronger n wiser n smarter n help so many other who this disease effects one day down the road. I know ur positive attitude has already helped me friend 🙂
    N ur sweet babies, how lucky they are to have u home w/them!!! There’s a bright side for sure!
    God will provide friend, 200%, you’ll see!!
    P.s. – have u thought abt filing for temp disability yet?

    Love u!!!

    Liked by 1 person

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