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AVM Survivors Network

How do you deal with it?


#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…


#12

That is honestly, right hand on the Bible my quote


#13

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


#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


#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.


#16

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

:heart: Richard


#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


#18

I liked the one from the Shawshank Redemption.


#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


#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.


#21

Hi, First off, thank you to all of you for your encouragement. It helps…

Secondly, an update on the meds. After looking at a ton of research and talking to a bunch of people, we decided that propranolol was what we wanted to try next. I don’t like to admit I’m scared, but after what I went through, I really really don’t want to have anything even remotely surgical done. In our research, my daughter found that it said there was some instances of breathing issues if you have asthma. (I do). So I e-mailed my pulmonologist and told him the whole story and asked him what he knew about the link between the two. He said he didn’t think it would be a problem, he’s had other patients on it before and it hasn’t caused problems and even if it did, there are a number of other inhalers we could use - so at worst, we’d keep an eye on it and maybe switch inhalers.

So, last night, I e-mailed my neurologist and explained my concerns about Botox (again) and the other injections and asked him to put me on propranolol. I also told him that we have done our homework and sent him what my pulmonologist said.

Cross your fingers and say a prayer that he’ll agree.

Thanks,

TJ


#22

Hope it works out. :crossed_fingers: :pray:


#23

I will definitely let you know…


#24

Hiya TJ, It’s been a little while so I thought I’d check in. I read a few of your posts and gather all is not quite peaches and cream. I’ve never had a migraine but I’ve had plenty of grand mal seizures so we’re probably in the same pain ballpark. Hopefully you can get that number of hours of intense pain/month diminished. That would help your quality of life in the face of the lousy weather.
But I’m not going to commiserate with you on that. It’s gorgeous in Phoenix. I went on a 1:20 hr hike without a jacket or hat. I do have to give it to you a bit, like I usually do…You’re not a tree!! I know you’ve got serious roots there and moving sucks but…
I’m 59, moved here from frigid New England because I knew if I didn’t do it then, I never would. BTW, I’m not recommending that you move, just teasing you.
I had a crappy avm day today emotionally. I lost, totally lost, not the slightest clue, an important file. I start to panic then I get angry and sometimes I lose control of my memory and doubt reality altogether. I feel like that hike saved my sanity today, literally. My prayers are with you pal, Greg


#25

Greg - thanks for the smile…

No, if this is peaches and cream, then someone forgot to pick the peaches soon enough and the cream wasn’t refrigerated properly…

I have often thought of moving to a warmer friendlier climate, but there is one thing that stands in my way. Family.

My mom is 3 miles away, my inlaws (when they aren’t in Florida) are 2 miles away. Collectively, they are 78, 80 and 81. All five of my kids are here (granted two of them are still in highschool), but it would be hard to leave them all. My kids are much “richer” in ways that matter because they have grown up knowing their grandparents and living near them. So, for now, that idea is on hold…

Though I have actually looked online for 20 plus acres either in the middle of nowhere in the fly over states, or in Canada. It’s amazing what you can for a reasonable price on Prince Edward Island…

I didn’t lose a file, but I forgot to write an appt down (I only have 3 to 7 a week along with my kids having another couple…) When that happens, my wife feels like she should be here to help the house and family run smoother - when what we really need most is to limp along at home but for her to keep bringing in the paychecks. So then I lay a guilt trip on myself (she gets frustrated but doesn’t lay a guilt trip - that’s my job) and hold it together until everyone else is in bed and then have a pity party by myself.

May we all make it a good day inspite of if not because of what our heads are trying to mess with.

TJ


#26

Hi Em,
I’m glad acupuncture is working for you. Western medicine knows a lot but it doesn’t know everything. I’ve learned the hard way that side-effects can be as bad a the symptoms they treat.
The other wonderful curative aspect is the human mind itself. The so-called “placebo effect” is truly miraculous. I believe there are lots of things that just work. And it really doesn’t matter that scientists have yet to perform a double-blind controlled study with a huge control group over an extended period of time.
Anyhow, sorry I started rambling there. Be positive, Greg


#27

Greg,

My daughter who has her doctorate in nursing practice (meaning she can do pretty much anything a doctor can except cut you open) said one of her professors said that “for as much as we know about the human body, it is amazing how little we know about the brain and how it works.”

TJ


#28

That is pretty much what my neurologist told me she said from everything we see you’re probably never going to get much better but keep trying as the brain is a mysterious thing and can do amazing things; we just don’t know why sometimes… :slight_smile:


#29

Hi TJ,
I hope you’re maintaining an even keel emotionally and the intense pain you’ve been dealing with subsides daily.
One thing I know about my human brain is how seldom it works. I should write a book about the dumb stuff an educated 59 year old is capable of doing.
Yesterday Greg went on an unfamiliar road-trip with less than a quarter tank of gas…arrives at destination which has no gas station…drives back with fingers crossed watching the low fuel alert proclaiming that “you are a dunce.”
But the underlying issue is existential. Is this related to my 2 craniotomies for avm and the resulting countless grand mal seizures, or am I just making lame excuses? My gut instincts tell me my memory has been affected. But I will never know.
It’s not like when I broke my femur due to a seizure. It’s a “no-brainer” that people don’t break their leg getting out of bed.
I guess the bottom line, when I’m really honest with myself, is that I’m scared. It would have been so-so easy to be on the side of a winding narrow street in the desert last night (out of gas where there is no cell reception) fearing for my life and wondering where I’d spend the night.
Do “normal” people put themselves into situations like this?
Sorry to dump this on this forum but I was raised to be self-reliant (it was like a religion) and I feel like I may never succeed.
Greg


#30

Hi td, I hope you are back to reading for pleasure. It’s one of the best things in my life sometimes. Anyhow, I’m responding to your wise statement relating to lost memory…“if you hit a block or feel frustrated, set it aside for a little bit.”
My reaction is usually frustration, anger and sometimes even panic. I’m going to work on being more patient with myself. It’s tough when you get a dose of guilt layed on top of the frustration (how could you forget our 60th anniversary…?)
Be well,
Greg