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AVM Survivors Network

Friday Wanderings

If you are looking for a post with a consistent theme, look elsewhere because this isn’t going to be that…

I have an important meeting at the Social Security department on August 28. It is amazing how time has slowed down since that date was set.

Summer is good. But summer is hard for someone with headaches/vision/nerve/fillinwhateveryouwantiprobablyhaveit .

My 18 year old son graduated from an urban, diverse Christian private school. With my older kids, it was a party because of the grades and such. With my 18 year old, it was a party because of what he has learned - about himself, about his beliefs, about making a difference, about being aware of the people around you and knowing that they have needs. He has authored many songs and poetry. He wrote a poem for my dad and read it to him all in his room at Hospice where we believed he had less than 24 hours until God called him home. 12 hours after his grandson read him the poem, he did pass into glory. The title of the poem, “I’ll see you on the other side.”

He and I have talked numerous times about how his music, at the start of 11th grade was sort of like my golf game when I was that age. I loved it but I wasn’t sure if I was good enough to make it more than a hobby.

I wasn’t. He has to make that same decision with his music - does it remain just a hobby or does it turn into something more? Hearing him talk to the Director of Admissions at the college he will be starting at next month, I was frankly overwhelmed at how far he has come.

Okay, proud dad moment is over.

Moving on - have any of you seen a link between the severity of your headache and how “out of normal” the heat and humidity was. Two weeks ago, we had a stretch of temperatures in the 90s and heat index levels approaching 110 degrees. We have air in our old farmhouse but for about a week after that, temperatures and humidity levels were back to normal and on the normal 1 to 10 scale, I would say I was running about 2 PTs higher. Anyone experience something like that or am I alone among the alone?

Did you know that when your “assistant” asks you to prepare a written documentation of all of the doctors you’ve seen, what they have said, what they did and the results, that’s a hard thing to do.

And amazingly long. As in 28 pages and just over 15,200 words.

And I learned a couple of things: 1) I will never pay more in health insurance premiums than what all this would have cost if I didn’t have insurance.

Secondly, but more importantly, I learned something about all of us…

WE ARE ALL AMAZING PEOPLE!

Every single one of us is.

This “thing” is rare, hard to treat, hard to see

and yet here we are.

This thing pulls down your attitudes - but you’re here - cheering each other on.

And I could go on and on and on - but I won’t.

How do I know you are amazing since I have actually never met anyone in person who has an AVM?

You’re here. You’re here reading this rambling note.

You’re in this group - trying to connect, to find information, to not feel so alone.

And the very fact that you show up to this thing called life means you are amazing.

If you asked me to say 12 months ago, describe how you feel, not how you feel in terms of symptoms, but how you feel deep down inside.

I would say that I felt like the ordinary soldiers at the end of the movie, “Saving Private Ryan.” It’s quiet, the fighting and noise and such is done and you limp out and start heading to base camp. You won, but it was a huge toll and that loss shows up on your face and the way you carry yourself.

But when I wrote out all of the crap that I’ve been through, and then I remember what the dean of students at my 18 year old’s high school said after I told him the whole story.

“And yet, here you stand and if that isn’t a testimony, I don’t know what it.”

So I would say I feel more like a soldier who is hopefully landing at a military hospital and comes limping off the airplane walking more like an 80-year-old and less like a 20-year-old. We won, he’s walking under his own power, but it came at a big cost.

I read an article the other day that said studies at a prestigious university (I forget who) seem to show that learning to play a musical instrument can help the brain heal. They were talking more in terms of dementia and Alzheimer’s but I took piano lessons until 9th grade, so I think I will try it once the only ones in the house are the dogs (and they can’t tell how bad it is.)

To quote William Shakespeare, “and therein lies the rub.” How can you learn to play an instrument without making a lot of noise? So will it make the ears and the headache worse while doing it but be good in the long run?

And with that, I end the ramblings for the moment.

Thank you for creating a source and a place for us to talk, ramble, rage, laugh, cry and any other emotion you can think of.

TJ

2 Likes

Top of the day to you TJ! thanks, I really enjoyed that post! I know you’ll be ready for the 28th and has to be weighing heavily. We’ll all be in your corner! Take Care, John.

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Hey there TJ,
Me and temperatures are a HUGE issue, especially the heat. I over heat. In the cold I have a tendency to sweat. During a couple of my surgeries they pierced my hypothalamus, the body’s temp CPU. When I queried this with the neurosurgeon he acknowledged it but then got very defensive, like I was blaming him. I explained that I was merely looking for answers, not blame, but he was having none of it.

I have found I need to keep myself within a fairly fine range where I don’t get hot but also I don’t get cold, otherwise I can become awfully symptomatic. Finding that balance can be REAL difficult. I also find barometric pressures have an influence on this. Spring and autumn are my ‘best’ times as things seem to average out OK, but the extremes of winter and summer can be hell. And then we have our wonderful politicians saying things like “There’s no such thing as global warming” Yeah, right. I’m a biological gauge that can prove that theory wrong.

I have had to do a bit of a write up on dr’s, with the who, when, why and outcome. I hated it, it can be a real confronting exercise BUT in saying that, what it did show was that I have exhausted every known avenue for treatment, every ‘approved’ medication to treat symptoms and even alternative treatments/theories that I have participated in. I can, hand on heart, say ‘Yes, I have tried that’ to almost every option possible. If a dr, a physician or a practitioner suggested it I gave it a rigorous trial. I have, in the past had dr’s say 'Well, you haven’t tried ‘X’, so maybe ‘X’ is the key". By trialling everything they couldn’t reject my claim because I hadn’t tried.

It’s interesting you talking about music. I had a client years ago, his speech was affected due to a stroke and he couldn’t find the words. His frustration was huge, to the point that he’d punch himself, full force, in the face, trying to get the words out.

One day I’m driving down the road with him in the car, with the radio on. And he’s singing every word clear as day. No stutter, no anger and no frustration. I found with the radio on I could ask him a question and using the tune on the radio he could sing me the answer. Someone had donated me an old tape deck/stereo and I donated it on to him. The change in him was amazing, not just in his speech, but in his whole attitude. The music helped him to communicate, which made my job so much easier and he was happier within himself. Joy all round. Music was one of his ‘keys’ to help him manage and it worked a treat. Just a pity I can’t seem to find my own ‘key’.

I also want to say here TJ, you call it ‘rambling’, but do you know what? Your rambling may just be the ‘key’ that someone else maybe hunting for, so you ramble as much as you like.

Merl from the Moderator Support Team

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TJ, Merl, John,

I love all of the above.

And yet here you stand and if that isn’t a testimony, I don’t know what is.

Very true.

TJ, if you fancy learning music in silence, maybe an electronic keyboard with a headphone jack would do the trick. Music definitely unlocks different parts of the brain than the norm. If merely listening to music of the right sort for you helps you to relax, there may be something in it for you. If music is loud, obstructive, difficult for you, maybe it’s not the answer.

Love all,

Richard

Richard, it’s interesting that I can listen to classical piano (maybe it’s just piano) and it is good for me - for the sound in my head, for pain levels, for tolerance of other sounds. Any other types, Jazz, R & B, classic rock (I won’t listen to country period) all behave like a regular noise - aka 15 min and headache climbs. Piano - not the angry Shostakovich style- at worst it’s a non-event. At best, 2 hours of listening makes for 3 hours of brain relief.

The thing about a keyboard is we don’t have one. The piano - we have a very nice that we bought approximately 30 years ago and the piano tuner was out to tune it and he said it was just as good as new.

Cheers,

TJ

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Merl,

I would consider it an honor if what I wrote/write has an impact on anyone.

Thanks!

Tj

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WHAT??? Are you kidding me???
Your writings/ramblings certainly, without a doubt, have an impact TJ. And I’m not talking for anybody else here but me. And I’m pretty damn sure I’m not alone. Even just in having that 'PHEW, So I’m not the only one…" is one HELL of a relief because all of this can so SO isolating.
You, my friend, are having more impact than you will ever know. Believe that.

Merl from the Moderator Support Team

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Merl,

My dad (passed away March 23, 2018) was a pastor in the Christian Reformed church. He always viewed himself as this preacher guy from a small farming community. No big deal.

He wrote 7 books, was the president of the demonination’s annual leadership 3 time (think - selected as a leader among your peers, and “after retirement when he left the church in the small farming town, he went to the denomination’s seminary and spent 15 years teaching, counseling and guiding students and young pastors.

I guess that just might be another trait I inherited from him…

TJ

P.S if August 28 goes as planned, I will be doing a lot more.

I sent you a birthday present. Why would I send you a birthday present if your words never touched me?

So, be of greater courage. You still have plenty to give and you may have inherited some of it from your dad, whose words also managed to touch me, even after he had passed away.

Richard

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For me, always impactful TJ! I always enjoy your posts, you have a way of saying things and making points that many(me included) do not have. You have a refreshing outlook when faced with adversity and challenges that teah me a great deal. Take Care, John.

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I want to share my experience with you. My husband had a brain hemorrhage at the age of 24. He was raised in a musical family playing Garifuna drums since he was 3. After the hemeorag he started suffering from grand mal seizures. Music is his life and dreams. I never gave up on him. He’s 29 now and writes, sings and produces his own music. Although its challenging at times, I always try and support his dream because he reminds me every day that this might be our last. Please support him by liking his Facebook page and sharing his music. Jerome Belize. Never give up hope. Find a way to make it work. There s alot of people who suffer with this condition and we can support each other. Thanks and God bless

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Can you give usn actual link to his page? Seems like there are a lot of pages: Jerome Belize