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AVM Survivors Network

AVM/Life Update

Hey everyone :slight_smile: been MIA for a while. Thought I’d give a little update on all the craziness and also ask for your advice. Well since I was last on here I added a few more medical diagnosis’s to my ever growing medical file :slight_smile: (some AVM related and some not), I had facial surgery (not AVM related), and I moved across 3 states so I could live with my sister and be able to go to the hospital’s I need to go to. Lol my life officially sounds like a sitcom. Idk if I ever posted this on here but I’ve never had a job, prior to all the AVM stuff getting really bad it was due to other health issues. Now it’s because of those health issues and AVM’s. Point being my sister doesn’t think any of this is that serious, it’s not that she doesn’t believe me. She thinks I can work a 9 hr shift and take a couple of tylenol and be okay. I’ve never stood that much in my entire life. Furthermore with the surgery’s I have coming up she thinks I can just take 2 days off work and come back no problem. These aren’t surgery’s you go work for 9 hrs two days later. But not matter how I try and explain it. She doesn’t get it. Honestly my plan moving here was to have the procedures, get everything managed, and then have all the testing, procedures, etc. for filing for disability. How the heck do I explain this to someone who is super healthy? Without her kicking me out
Any advice would be greatly appreciated

You raise an interesting and difficult to answer question. I’m a brain AVMer so can’t speak from specific experience in respect to the particulars of extremity AVMs. I have learned a ton on here about the extreme challenges the extremity AVMs cause. It is difficult to explain to people who haven’t experienced anything remotely similar.

My recommendation is to be as upfront as possible…we can’t make people understand us but can relay how it impacts us. In my case I had lots of people tell me I looked fine, or you’e always tired etc…I don’t know if most will get it…but hopefully your sister will understand it’s not a choice you made. Take Care, John.

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@KoalaLove
I am so sorry about your sister- I would talk to your dr first and tell them about your sister and how she doesn’t get it. Then bring her to an appointment and have the dr talk to her about it in layman terms.
Some people esp family I think its a way to cope that they are in denial. Even after I was in a coma and had brain damage and could not move or talk and the drs were telling my family I had a long recovery, brain damage and my thalamus was dead - My Dad yells out I can afford to loose brain cells cause I am so smart! I cant speak at all at this stage but inside my head I am yelling SHUT UP. I had also lost my ability to swear even in my head.
Luckily I did recover I still feel terrible and have constant pain but can walk and talk so I am thankful but I can not work and I gave up a 6 figure job that I loved. Do not feel bad that you need to go on disability apply as soon as you can.
It may just take her longer to get it or she may never get it. The most important part is that you are getting the best medical care you can get. We are here for you and of course get it.
Hugs Angela

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