Hey all, It’s a been a little bit since I’ve written on here - time for an update…
First, a 40 years update in 2 sentences. Diagnosed originally in 1978, treatment in 1978, 1986, 2009 and now 2018. Started in left neck and spread and migrated up towards my head.
Now - Embolization treatment to reduce the risk of brain bleeds on January 30, 2018. Woke up with no hearing in left ear, extreme sensitivity to noise, enough balance issues to be a nuisance but not enough to keep me from driving - for shorter periods - too long and the road noise does a number on me - or from walking and a paralyzed left vocal cord. Have not been back to work yet and really don’t know what work I could do with these symptoms.
My last post was celebrating the fact that I slept in bed - a flat bed - but that only lasted two nights. Both times, I woke up with significantly worse headaches that kept me up for a while (as opposed to my usual 10 minutes) and significantly more tired the next day. My wife and I and my therapist decided to put that on hold and get more rest in order to deal with it all better.
As I’m waiting for the Social Security Department to process and hopefully approve disability, I’m spending a lot of time working on the emotional and mental process of reinventing myself. I’m working on adjusting to the hearing loss and the isolation that comes from that. I’m working with my counselor on how to make sure that the angry and the sad don’t rule my life. Allowing for them but don’t let them rule you - that was his advice.
I am working on a writing plan - because I feel very “normal” when I can communicate that way - and I have probably 75 articles planned out that I want to write - so hopefully disability gets approved and I can do that.
Last week, my therapist asked me to try an exercise - take 30 minutes and write down everything that you want to do. Not from a bucket list standpoint but from the standpoint of, “I can’t work, so what can I do to keep myself from going nuts and feeling like I’m doing some good.” I did that - and was amazed at the things that I could think of - I don’t think I’ll ever make any substantial money refinishing old furniture - but it might be enjoyable - just one of the things. It really opened my eyes to things that I hadn’t thought of before.
This week, we’re going to start figuring out the “steps” to do these and the realities of making them happen. That will probably narrow the list down a good bit - but will also provide clarity and purpose - which are crucial for decent mental health and feeling okay about yourself. I was going to make a joke about keeping me from drinking too much - but I had one beer with my brothers after my dad died - and hardly slept that night - my head hurt too badly - so I’m not worried too much about me wanted to drink too much.
The other thing I wanted to share - my physical symptoms - ears and voice - aren’t getting better on their own any more - kind of plateaued - but I’m being persistent in letting my doctors - both the neuro and the ENT - know what’s going on and we are attempting to work through assistive technology to try to help. Right now I’m wearing “filtered earplugs” that reduce sound levels by 25 decibels. Makes it possible for me to go to church, to go to my daughter’s graduation and things like that - even if I can’t whisper with the person next to me while it is going on. Whatever side effects/issues you have, keep pushing. My experience, so far, has been that what the ENT doc wanted us to try the first time - is plan A and there are at least two other options beyond that as well. Does that make sense?
Two other thoughts - I have a 16 year old and a 17 year old at home - and I’m dreading the school year being done - because then I have more noise around the house. Otherwise, I had the time when my wife was at work where it was just me and the dogs. Hopefully they will both have summer jobs.
While I definitely didn’t have a James Earl Jones smooth voice, with it sounding crackly and raspy, my kids (both adopted, both with trauma issues) have a hard time determining when I’m just trying to project loud enough to be heard and when I’m actually upset. Makes it a challenge too.
Okay, one more thought/question. My therapist said that it is important, since I look overall healthy, to be open about the issues that I’m dealing with - because you can’t see them. So, I’m going to be doing a fairly decent amount of writing on my blog about my story and the AVM is a large part of that story. I would love to do a series on there featuring you guys - I’d probably title it something like, “The Top 5 Things You Need to Know about AVMs - from people who have them.” So, if you have anything you’d like to add to that, I’d love to have you either share it in the comments or message me. I’m thinking I would reference and link to the group but not mention any names individually.
Stay strong and keep in touch,