chronic illness

Life Changing News

Hello blog,

Life has been busy lately and so I just haven’t had time to blog, especially since my immune system has been misbehaving.Last week we were dealt a massive blow. Riaan has been diagnosed with young onset Parkinson’s disease. Understandably, people have some questions so here are some answers:

Q: How did this diagnosis come about?
A: Riaan has a history of repetitive strain injury, which is par for the course as a software engineer. And what we thought was his RSI was interfering with his quality of life, so I nagged him to go to our GP. She did x-rays but couldn’t see any thing obvious so she referred him to an orthopedic surgeon. The orthopedic surgeon referred Riaan to a neurosurgeon who then referred Riaan to the neurologist who made a preliminary differential diagnosis of a brain tumor or a stroke or Parkinson’s. And required an MRI and extended blood and urine tests in order to make the diagnosis of atypical young onset Parkinson’s Disease.

Q: What’s the prognosis?
A: Because of this being atypical Parkinson’s disorder the neurologist has no idea of progression and whether it will get worse.

Q: What is the next step in this process?
A: Getting in with a neurologist who specializes in movement disorders including Parkinson’s. Two specialists have been recommended to us and we are in the process of getting appointments.

Q: Is there a family history?
A:No.

Q: How does this affect our plans for the future?
A: The most significant change is that we are unlikely to be successful in our application to move to Australia because Parkinson’s is a degenerative condition. So for now, we are not moving countries. Career wise we will take it as it comes but we are slowly going to shift to my career and income becoming more important.

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So we are now adjusting to a new reality, taking it one step and one day at a time.

Love and life altering news,
Trisha

I breathed a camera up my nose, what did you do today?

Hello blog,

As I said yesterday living with sick is generally unpleasant. Sometimes parts of the diagnostic process can be interesting…like having an Otorhinolaryngologist play a piano tuning fork on various parts of your head to test your hearing. Other parts like them sending a camera through your nostril and down your throat are way less fun, even though they can be interesting albeit gross.

This was the second time that I had a camera through my nose. This is a completely conscious procedure and is about as pleasant as it sounds, especially without any local anaesthetic. The first time that I had this procedure was last year before my thyroidectomy and it was less intense, I think because my body did not know what to expect.

Today when Dr Neels van Schalkwyk said that he needed to do a nasoendoscopy I responded with dread, because I remember how unpleasant it was. Last year was the first time that my curiosity did not triumph over discomfort where the doctor offered to explain what he saw through the scope. The net result of this was an interesting manifestation of an anxiety attack (made more challenging by battling to breathe through my nose. My go to trick is slow mouth breathing when I get an anxiety attack) so I needed to breathe through my nose with tears streaming from my ears.

But the good news is that it looks like I have a diagnosis for the persistent ear and throat infections. Or rather, I have two (what can I say, I am an overachiever when it comes to these things). The persistent earaches are the result of something called Costen syndrome which is strongly linked to anxiety. And the persistent throat infections are the result of asymptomatic reflux. So some extra meds to the morning cocktail and hopefully that will be under control as well.

Hopefully next week will be much less health related stuff and more fun things.

Love and diagnosis,
Trisha

Walking in another’s shoes

Hello Computer,

I have been sick for the past couple of days. Nothing major a touch of stomach flu followed by a cold. This bout with ill-health really made me appreciate and admire those who live in chronic pain. I am friends with a small number of people who live with their invisible illnesses, and after my adventures in pain I am in awe of them.

I read a quote on Facebook, describing a visit to a medical practitioner with chronic illness (quoted from a Tumblr):

going to the doctor when you’re chronically ill is weird.

It’s like imagine everything in your house is on fire, and you’re standing there and the fire department come in like, describe the fire to me and maybe we can find what caused it and put it out.

and you can’t just say everything so you’re like… well the fire in the curtain is the biggest
but the fire in the photo albums might be doing the most damage
also the fire in the couch is really inconvenient

occasionally the fire guy is like, well your tv is on fire so it might be electronic-fireitus but that would cause other things like fire in the dvd player

and you’re like, oh yes. that’s been on fire for years. I forgot to mention it because it’s always been a relatively small fire. It’s right next to the bookshelf which has much more fire.

and then the fire guy is like, oh. I wouldn’t worry about that. book shelf fire just happens sometimes.

I am experiencing a new level of empathy to those who live life with a chronic illness, especially accompanied by pain. I am in extra awe of those who parent while ill. I salute those who live life happily and fully in spite of their pain. I salute the way that you don’t constantly wallow in misery, and don’t happen to slap the healthy people who have the odd misadventures in ill-health with a frying pan shouting something along the lines of: THIS IS WHAT MY LIFE IS LIKE ALL THE TIME! DO YOU HEAR ME CONSTANTLY COMPLAIN? NOPE! THEN GET OVER YOURSELF!

Love and health,
Trisha