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AVM Survivors Network

Transition from working professional to disability, and how do we sustaIn our lives?

#1

Hi all

To date, I have nearly 40 years as a working professional, and I'm 55 yeras old.

My AVM is 2.3 cm x 1.2cm. I also have glossopharangeal neuralgia, and cervicle arthritis with moderate spondylosis. They told me there is 100% risk of complication for any kind of surgery.

My headaches are constant, daily, and intense. I was on morphine for the headache pain, and now on Oxycet, which I'm having trouble with. They wanted to put me on disability 3 years ago, but Ive continued to work at my profession. Its gotten to the point that I can't work anymore, and need to make the transition from a working professional to a person on disability.

Theres a huge gap between what disability pays in Canada, and my income. It's scary for me. I will be trying to find someone to help me go thru the process as with this headache, and my lack of knowledge of the system seems a bit overwhelming for me to do on my own..

How do we survive financialy when youre on your own after going on disability? It pays just aroubd $1000 per month.

I cant be the only one of us that faced the realization that life has transitioned to being a dependant.

Not feeling sorry for myself, but hoping perhaps someone could share thier experience relative to that aspect of our lives.

I dont know where else to turn, except to the body of our group here. My apologies, but I feel a little bit lost here.

Thank you for reading, and in advance for any responses!!!
Ed

#2

First off, I am in the USA, so fortunetly my disability after working a number of years is higher. But my salary vs benefit was a good 1/4 of what I made before. I had to make a lot of choices of coarse, but I do get by. Biggest trick I had to do was get rid of all debt, that helped a lot. Hopefully your house is paid for, if it is you will probably be able to get by. But just watch what you spend of coarse. Good luck my friend:)) James

#3

Thank you for the support James! It's pretty much what I've been envisioning, and your comments are encouraging. It will be a bit more difficult for me, as I do not own a home.
Its awesome that we have this group. Thank you for taking the time to read and reply!
Ed

#4

I second what James said...pay off what you can and if the mortgage is no longer a problem...I was a working professional for almost two decades and now on disability. Yes, while it is great to have some income, but it is not quite what I used to make. Hope did I cope? Before I got disability, I tried to work. Let's just say that didn't work out. I cut back substantially (you'd be amazed all the stuff we non-chalantly pay for). The biggest help though was paying off my bills. While we can't begin to compare circumstances (and I certainly don't want to do that) its a rough road nonetheless. I know you can do it. Stay strong, and like James said, good luck. :J

#5

Thank you Suzy! I sincerely appreciate the response and the support! Thank you evrybody! This site is precious!

#6

Hi Ed-I kind of had this salary and benefits shock prior to my AVM bleed, but it is quite an adjustment.

As mentioned, I soon realized how much “overhead” was wasted on eating-out and unnecessary entertainment.

It can be done-I’ve done it before-and like already mentioned, you need to watch your expenses…keep in mind, though, that it is a good reminder that the best things in life are free like laughing, love, yada-yada. :slight_smile:

#7

Yer awesome! Thank you so much!!
Ed

#8

Ed,
I understand your fear. I worked from the age of 15 until my bleed at the age of 38. Like Suzy, I tried to go back to work and it just wasn't possible. Fortunately for me, I've been poor all of my life so living on disability wasn't much different :). Seriously though...I'm fortunate that I have a husband that works. Before my bleed I was the primary bread winner and the source of health insurance. It's been a struggle for sure but we make it work. Being poor and alive sure beats the alternative any day!

#9

Thanks-I have my moments.