It’s no secret, money makes this world go round. (Some may suggest other things do but…). This week, I’ve been reminded again just how expensive, inconvenient and burdensome this condition is in my life. At my last visit, the Neurosurgeon told me to see an Ophthalmologist and also to get an MRI of my brain and whole spine, when I felt “good again”. To me, this means, the results and findings will be “normal” because it’s being done when I feel fine. So, I’m not expecting any significant findings. I did however, have a moment where I just sat back and thought: “How much is this going to cost and is it really worth it?” (His consult, 3 weeks ago, was AU$300 with a Medicare rebate of AU$113.65).
Guilt, a feeling I have each time I have these diagnostic tests done. Self-imposed, caused by others, combination of both…who knows?
The Ophthalmologist visit, earlier this week, set me back AU$129.95 + Medicare rebate of AU$75.05. The MRI which cost AU$891 was thankfully covered fully by Medicare. (Breathe a huge sigh of relief!). To some it may seem like small change but when you add it all up in a short space of time, it’s quite a handsome sum. (What about those of us who don’t have any means of paying for these tests or consults? If you’re going to say public system, then think again). And, when you’re on a single income, it’s a bit stressful when the appointments seem never ending and your safety net starts disappearing. I feel like I’ve always had some or other check, prod or poke! And, with all the stress of this Coronavirus I don’t anticipate my husband having much luck of finding a job any time soon. Stressful!
The eye test was normal (as expected) however, the Ophthalmologist said he would wait for the findings of the MRI, to review and give his input. I don’t remember much of this consult either but walked away feeling like he too was thinking outside the box. He agreed that there are a percentage of patients who don’t always present with obvious signs, these are sadly overlooked and they get placed in the “too hard basket“.
The MRI took just over an hour with contrast. Honestly, I’ve had this done so many times, it doesn’t affect me. However, this time around, I was left in the machine, a tad bit too long with my own brain and thoughts. (A scary place to be, as I found out!). They fluctuated between memories and thoughts which made me smile and feeling happy, to memories and thoughts which left me feeling tormented by my past. No way out then and no way out today! Yikes!
I requested that all my other scans be uploaded to the patient portal as per the surgeons request, in order for him to do a comparison between pre-diagnosis, ETV, post ETV and today.
The nurse who removed the needle from my arm remarked: “You have a lot of scans!” I just smiled and said to him: “You should be thankful I wasn’t diagnosed at birth ‘cause then you’d have even more to upload!”. We laughed and he agreed…
Then, the admin lady at the front desk asked me when I would see the surgeon next and I said, “When I get sick again…” Exactly when that will be, is anyone’s guess.
Bottom line, I’ve come to a point where I’m truly over it but, in a peaceful way. No more do I expect my husband to know any of this or even remember that I told him about this appointment a few weeks back (and not because he asked). Not even when he kept asking me where I was going. I just smiled and said: “Don’t worry about it“. (Facing it alone, remember). I left the house in a good frame of mind, not stressed about his reaction to yet another expensive appointment which would probably show nothing wrong. I didn’t have to feel anxious over the tone of his voice or replay the change in his body language over and over in my head, adding to my level of guilt. (My over analysing brain at work). I think this new approach may be good for us…time will tell.
When you lower your expectations, you eliminate the ensuing feeling of disappointment. And, sometimes the people in your life, require nothing more than to be on a “need to know” basis.
As mentioned in my previous post, I decided not to put too much expectation on this surgeon either, but have the tests done he requested. In his plan, the next phase is for me to go to the hospital should I become symptomatic again. (For a lumbar puncture or ICP monitoring – to be determined at the time).
I’m on the fence about this…
Now, I realise that may sound dumb to some of you but here’s my thinking. (Anyone who knows my journey or follows this blog will know). This is all de ja vu to the max! How many times do I have to go down this road? I’m tired of it. It’s expensive and feels like all I’m doing, is throwing money at a problem that won’t go away! (Incurable condition requiring brain surgery as the only treatment option…repeatedly). What other choice is there though? The seed of doubt grows in my own mind too as to whether or not any of what I feel is real.
Going loopy is an understatement while trying to remain sane.
Maybe my next option is to move on to medical marijuana to manage my symptoms, since they seem to self-resolve after some time. Now there’s an idea I need to explore💡