Do you have a backup plan?

Do you have a backup plan?

My experiences over the last while have certainly not been unique to me (Confirmed by the comments and messages I’ve received).

This past week, I have had various reactions consisting of outbursts and crying when I’m alone because of sheer helplessness and more.  I regrouped and put my thinking cap on because a situation like this, requires you to explore avenues you haven’t thought of before (at least that’s the case for me).  Despite the challenges, I’m extremely grateful to have been given a backup plan (Thank God!) – it’s not perfect but it’s a plan nonetheless.  It got me thinking…

What about those people without a backup plan?  People, whose circumstances dictate otherwise and leave them stranded?

All I can say is, being placed in this situation, to begin with, (Especially when someone can do something about it) is not OK!

Nothing I say or do will correct the experiences I had last weekend, I cannot change it.  But, hopefully by telling you what I’ve had to do and am about to do, will help you along in a positive way.  The biggest question I’m faced with at this point in time and, need answered: “Is my ETV failing?”

To recap:

Because I knew help wouldn’t be forthcoming at the local hospital, I asked members of the Hydro group in the other city if they could recommend a Neurosurgeon.  Once I found the one I thought was a good fit, I asked my GP to refer me.  Unfortunately, by the end of that week, I had no other choice but to go to the Emergency Department.

What I told them going in:

  • I’ve been waking up during the night and especially in the morning with a headache, which improves once I’m up.
  • The pain is predominantly at the base of my skull and across the top of my head.
  • I have spinal pain from the top to the lower part of my back, which started going down both legs for the last 2 days.  (The one reason why I decided to come in).
  • I have nausea but no vomiting.
  • I’ve lost my appetite and haven’t been able to eat much over the last 3 days.
  • I’m extremely tired and struggling to concentrate at work and at times get a bit confused.
  • When asked why I didn’t want to take the prescribed antidepressants, I told them: “I prefer not to take it because I had suicidal thoughts while on them and, I have a family to think about.
  • I’ve tried sinus rinses in case that was causing my headaches, had a massage in case I was a bit stressed but nothing has worked.

That visit went nowhere.

Their summary in the discharge letter sent to the GP had this to say:

And the cherry on the cake:

If I were seriously depressed, I think by now I would have done myself the biggest favour ever, in the mind of a depressed person.

The (Nightmarish inconvenience and financial burden) plan:

  • Surgery to do ICP Monitoring has been booked for 23 August.  The insurance is yet to approve this. However, if they don’t, I have a backup plan, which will cover 80% of the estimated cost of between NZ$15,603.95 or NZ$16,603.95.  (The 20% is money I don’t have but I’ll have to figure something out).
  • MRI with flow study done last Friday – waiting on results.  Hopefully, this will tell us if something IS wrong (It may not) and if the ETV needs to be redone instead.  (Thankfully the surgeon is prepared to do this if needed).
  • Figuring out the logistics of getting there and back and also where I’ll stay before and after (Not an easy task in a city all by yourself as my husband and kids will stay behind).
  • Praying that everything goes according to this plan and there are no complications.  (One step at a time…I know).

Regardless of whether my ETV is failing or not, I feel that I need to do this – even if it’s just for my own peace of mind.

How far would you or have you had to go to get the treatment you need?

Published by Skyewaters

I blog about Hydrocephalus to give a voice to the millions (if not billions) of people around the world with this condition NOT disease.  As much as these experiences are unique to me and my family, I’m sure others have experienced it too.  My aim…to shine a light on it and raise awareness – simple and challenging at the same time but worth it!

2 Comments

  • vhvixen

    August 13, 2018 at 2:55 pm Reply

    I hate when they go straight to depression and anxiety when your upset or frustrated because your not feeling well and just want to be treated or healed and, they use depression as an answer because they don’t want to treat you or take time to find the cause because they don’t want to be responsible or are just plain lazy.

    • Skyewaters

      August 13, 2018 at 9:04 pm Reply

      The depression excuse is wearing a bit thin on me right now too. I’m actually starting to wonder how many people they’ve incorrectly diagnosed with that mentality.

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