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AVM Survivors Network

How do you deal with it?

#1

Okay, guys (and gals), I try to find the silver lining behind the thunderstorm but today it’s hard. A couple of things are hitting me right now…

  • I think I told you before, but my neurologist thinks the only possible “relief” for my headaches is botox which “might” put me on a feeding tube and on a ventilator for a few months or more. Yuck.
  • Yesterday, I met with the neurologists’ Nurse practitioner to come up with a Plan C (we’ve already tried two meds that haven’t worked). She right away wanted to jump to a new (FDA approved injection - about 15 months ago) that is supposed to prevent migraines. I went in to the meeting prepared to ask about beta blockers, other tryptiline meds, propranolol and some others. There are reasons (asthma, high blood pressure, history of no results with amitryptiline) that they don’t think those would be good to try. These injections are, according to my own researcher (TJ’s daughter the Dr.), what is considered second line meds. That means they are less likely to work. So, 1 + 1 usually equals 2, so they probably won’t make a difference. If we can even get insurance to cover them.

And then this morning - I met with the OT lady - I’m making progress with my eyes - not seeing double nearly as much as I was - but it’s still an issue.

And to top it all off, 22 days from today is the day that I really don’t want to remember. That’s the day that this all started.

What do you do on that sort of a day?

We’re a year down the road and we basically are no further than we were in maybe May or June? Except for the balance - that is better - probably 80% improved.

On a dreary, cloudy, windy cold, rainy, soon to turn to snowy day, help a guy out. Besides for material to fight social security with, what have these last 6 months been good for?

TJ

P.S. If you’re beginning to think, do we need to worry about TJ and whether he’s going to do “something” irreversible, don’t worry. I have slept on the floor outside my son’s room on suicide watch before. I have a wife, a therapist, a pastor, friends, brothers who I would scream long and hard to before I’d get close to that. This is a “gee, I’m sick of wading through this shit (moderators, if I can’t say that word, please change it)” type of post.

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#2

I have those moments and usually leads to me being angry and having an emotional breakdown, swearing, screaming crying and then collecting myself and realize I still have my wife and daughter and as long as I have them I’ll keep fighting to get through this and hope someday I can get a little more of my old self back.
Fortunately I don’t deal too much with migraines just the occasional partial simple seizure with a mild migraine.
General the only pain I deal with is when I walk into a wall due to my lack of peripheral vision… :slight_smile:

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#3

I guess I’ve got you there - the only walls I’ve walked into have been the ones where the door frames have suddenly moved as I was attempting to walk through them. I usually hit that with my shoulder not my head, so that’s a good thing.

Thanks for the reality check about family. I needed that.

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#4

@TJ127 you’ve got to count your blessings.

You’ve got almost the worst deal I know of (I have @Charles3 in a worse state than you and I like to send positive thoughts in his direction as often as I can) but you’ve both got a shit deal (I think the word is justified in this thread). The only thing is to be positive, like Mike says, about the people who are standing by you and the tiny progress that you’re making.

Not sure what we do about the 22nd. My parents have a friend whose birthday is on 1 April, which he doesn’t like, so he calls it 32nd March instead. Maybe in your house you can have the 29Ath of January and then the 29Bth of January and then skip on to the 31st or just renumber them 29th, 31st and 32nd on the calendar in the kitchen.

You have to be positive. I can’t say I like this time of year, really. It’s cold, it’s dark and not conducive to doing much. However, I’ve decided that if the last 2 weeks of January and the first two weeks of February are the pit of winter (and they really are) then once I get to St Valentine’s Day, we’re on the downward slope (= lighter burden) into spring and summer again. So I need to get through two weeks to get to winter proper, then it’s just four weeks of winter. Then I’m focussing on spring.

Plus, I found some daffodil and tulip sprouts coming up this weekend already. Another sign that the season is moving on. All good for me.

So remember the stuff that’s good about life rather than focussing on the shit. Oh, I said it again. Eyesight a bit better. Balance a bit better. Good stuff. This thing is slow.

Lots of love,

Richard

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#5

Daffodils and tulips? I want to live near you. I kid you not. Last night the weatherman said that in the last 39 days, we have seen 0% of the possible sunshine. That’s right. No sunrises, no sunsets. Just dull, boring, depressing clouds of gray. And it has actually been a mild winter so far. Usually we’d have about 3 or 4 feet of snow by now.

See, this is just one of the reasons I love you guys. You say what a guy needs to hear - and it rings true - because you’ve been there. My wife, bless her soul, she’s put up with me for 33 1/2 years already, doesn’t know what it’s like to hear constant audio feedback in your left ear. All.Day.Long.

I just find it overwhelming some days (okay a lot of days), when I try to think about how to live with this for another 20 to 30 years and to actually have a good quality of life.

Oh and Richard, you remind me with your “oh I said it again” comment - 11 years ago, my wife was on a mission trip to Haiti with our 2nd oldest (now Dr. V) and the oldest made some pretty bad choices (aka running away with a guy she met on the internet - but it wasn’t on here - so he’s got to be shady). I didn’t know where she was, I’m instant messaging with my wife and we’re both a bit stressed to say the least, she says to the missionary friend of ours they were staying with, “Tara, can I say it?”
“Absolutely”
“Shit, shit, shit (repeat 5 times)”

Tara yells into the kitchen where Troy was cooking (he’s a better cook than she is - go figure) 'Hey Troy, Cheryl said a bad word!!!"

It was an ice breaker on some significant tension.

Oh and 11 years later, oldest is marching to the beat of her own drum but she is attending church and getting along relatively well with all of the family. That was a long road too.

One more rambling thought - I’m assuming that everyone’s screen has the split view where you write on the left and it shows a preview (or it can) on the right. Did you know that if you have double vision and have it set that way, that actual gives you quadruple vision?

I should get extra credit for that, right?

Thanks for the lift -it’s helping already.

TJ

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#6

I’m happy to just nudge you along the road from time to time, if it helps. I do the same with my wife.

We live a pretty modest life and afford some things that people in the developed world often take for granted and can’t afford some things that others in the developed world unreasonably can afford. So I take my pleasure in the simple things of life, like those 1" or 2" shoots of daffodil. Because that’s what I can afford/relate to. And I enjoy that. I enjoy a posh holiday from time to time – we had a do-it-yourself tour of California some years ago and a similar visit to part of South America, so we can do grand things sometimes.

But daily sustenance
comes from the smaller or cheaper pleasures of life,
like those shoots
or the fabulous sky
we had this morning
or being able to pick up a friend by using
bare
words.

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#7

You’re definitely more positive than I am! (If that’s any reassurance) But like Mike says, I have my days too when everything is unfair and everyone has it easy. I’m pretty envious of everyone who is “normal” As for the anniversary of the beginning of our nightmare: I didn’t really do anything the first year (I regret that) but this year I’m buying cake and celebrating it as my rebirth because I could’ve died and I got a second chance, even if currently disabled. Mainly because it’s an excuse to eat cake and I love cake! On my tough days I do as much therapy as my body can handle. That’s how I take my frustration out plus I want to eventually get close to a “new normal” and I’ve been told that repetition is the key so I do as much as I can on those days: yes there’s tears, sweat, cussing, muscles trembling and my glasses fly across the room because my vision was also affected. But the only was to get through it is to get through it and it took time but I accepted it. My friends and family think Im one tough cookie and really cool for fighting to recover and I always tell them I wish I wasn’t in this situation and that instead I was worrying about simple day to day things like them. Which I do worry about finances and my son on top of my recovery so it is a major pain. Cheer up, all of us here are struggling too so my advice, try to have cake on that day:) you’re alive and kicking butt!

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#8

The strangest idea just occurred to me. Perhaps “sanctuary” should be extended to those who are trying to put together the pieces of a life broken by brain injury.
If anybody who deserves a break, it’s someone who’s life has been shattered through no fault of their own. The consequences of a previous life aren’t wiped away. If anything, the situation is more difficult. Marriages are often wrecked when the patient or spouse can’t handle the new situation. Bills didn’t stop. Medical expenses are laid upon previous financial obligations. Everything that existed previously has been ripped away.
More to follow …

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#9

Just don’t do like TV shows do and tell us, “stay tuned for Season 4 coming in the fall of 2020.”
TJ

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#10

Don’t you hate that? Or when you know it’s going to be a 2 part episode? You catch a glimpse of the time and you know what’s next.
I was trying to figure out how to finish my thoughts without sounding like a complainer.
There’s that old saying about "sad I had no shoes until I saw a man who had no feet? Footless men don’t need shoes. In other words, yeah, things could be worse but it doesn’t mean your problem isn’t important or doesn’t affect you any less.
Our medical issues affect us in many ways. And every day, we go forward, generally in silence, but we go forward. Anyone can see the beauty of a rose, many of us have the ability to see the beauty of a dandelion.
And every day. We get up. And we go forward.

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#11

“Anyone can see the beauty of a rose, many of us have the ability to see the beauty of a dandelion.”

drops mic

Can I use that in a blog post - or is it a quote from someone else? That is golden advice…

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#12

That is honestly, right hand on the Bible my quote

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#13

So can I use it? And if so, how do you want me to attribute it to you?

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#14

Sure you can.

The correct quote would be:

Anyone can see the beauty of a rose. Few see the beauty of a dandelion.
John A. Argese

Thanks. I haven’t found anyone to do one of those needlepoint sampler things on a pillow

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#15

Hey TJ,
I saw this the other day and although I wanted to respond I was having one of my FTW days and for me to be commenting on those days only brings everybody else down, so it’s better that I just don’t.
As for your ‘Shit’ comment, well, what else can you call it? As they say ‘You can’t polish a turd’ You can gold plate it if you want, but let’s face it, it’s still shit. My wife is often asking how things are today and my response is “It’s all shit, it’s just the depth that varies” Some days the level is at my neck, other days it’s over my head (no pun intended).
We MUST let it out, if we don’t we internalize it and that can eat away at us even worse, so don’t be doing that. We need a safe environment to release it and that is exactly what this place is, a safe environment. We don’t judge because we know exactly what you are on about. If we make the judgement that you must be crazy, then where does that leave the rest of us?.. …even more crazy?

And youse fellas are lucky if it’s only the walls/doorways that move on ya. Often the damn floor moves, it jumps up on me and I find myself face down on the carpet lol (and if I don’t say ‘lol’ I’ll end up in tears looking at the reality of it all).

TJ, I have been down that medication/treatment route and IMO, you must give it all a trial. My only recommendation is do not be expecting any great miracle, that way you will not get too disappointed if they don’t work and have such joy if they do help. Even if such treatments can only give you other ways in which to manage, even that’s a plus. I have had to learn that even minute gains are still a gain. Add all of those tiny gains together and the over all improvement can actually be quite large.

I do have to agree with both Mike and Dick in regard to being thankful for the things we do still have and are still able to do. Once or twice a week my wife goes into town to work and occasionally I’ll go in with her. Last week I visited a former client who had a stroke at the age of 16, he’s now 45 and in fulltime residential care. And BOY, wasn’t that a reality check. He stumbles to find words, gets angry when he can’t and punches himself, full force in the face, in frustration trying to get the words out. He knows what he wants to say, but the words just won’t come and I think “F%#&, that could have been me” PHEW. I take him out, down to the park for a wander around the mini lakes with me pushing his wheelchair. For just a bit of a change in his environment, and then return him home and then I think “Bloody hell, ain’t I lucky”. That is a reality check.
I ‘try’ not to get envious of ‘normal’ people, but have more of a realization that as bad as things are, they could be a hell of a lot worse. That could have been ME!!!

Merl from the Moderator Support Team.

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#16

and the miracle is that you both get something out of it.

:heart: Richard

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#17

I have a daughter who runs a side line business doing crafty stuff like knitting, crocheting, jewelry and such - if you’d like, I’d be happy to see if she’d be willing to talk about doing one for you…

TJ

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#18

I liked the one from the Shawshank Redemption.

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#19

Hey TJ!
I’m so sorry you’re having a rough time with all of this.

I tried Botox for my migraines and did it for about nine months and it worked quite welll. Unfortunately I had a seizure while they were doing it so I can no longer have it.

I thought I was at an impass, like I would have to live with my dibilitating migraines for the rest of my life and completely lost hope.

Until I got acupuncture!!! I was really skeptical but it is the ONLY thing that has worked sosososo well without putting chemicals in your body!!! Please consider giving this a try. Let me know if you have any questions about it!

-Em

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#20

Hey man, sorry for the rough patch. One suggestion - give propranolol a shot. My kid has among the nastiest AVMs that one can have, and we tried all kinds of stuff to help him with debilitating headaches. Nothing worked, except propranolol. Now he loses only a couple days a month to headaches, otherwise he functions up to his capacity unimpeded by headache pain. You mentioned high blood pressure - propranolol is primarily used to treat high blood pressure, and can be your first line med on that front. Headache drug effectiveness varies across people as function of their unique physiology is ways that we can’t predict ahead of time, with the exception that trends do run in families. But bottom line - propranolol is a common drug associated with good data re: headache relief, and has minimal side effect risk. Seems worth a shot before you mess with injections or botox. Again, propranolol is fantastic in helping my kid have a decent quality of life, and his AVM is about as big and ugly as they come.

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