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AVM Survivors Network

I Don't Like Being the Worst in Anything

#1

Hey All,
I’ve missed you - and it’s my fault. Well, it’s actually sort of my fault, probably more the circumstances around me.

Either way, here’s some thoughts on my journey - I hope they bring you, if nothing else, a small iota (it’s been a long time since I have used that word) of realization that we are all walking along the same mountain path.

Did you know when you are dealing with PPTH (persistent post traumatic headaches) and then you come down with a normal old winter time virus, it gets very very ugly. I learned that this week.

However, in spite of that nasty virus, a couple of other interesting things have been going on. I’ve been having more problems with eating (It’s that whole swallowing thing that’s the challenge) and with choking/coughing.

Had a follow up appt with the laryngologist on Wednesday. And it turns out I have the worst case of candidae infection in my throat that he has EVER seen.

That’s not the type of attention you want to have. So what do we do about it? Doc is consulting with their infectious disease Drs to figure out but it looks like they will have to go in and remove some of it and then try the rest medicinally. I don’t have a very good history in the last couple of years of having breathing tubes etc. go down my throat and the concept of cutting things off the side of my throat makes my throat hurt already, so we’ll see what happens. I will definitely keep you informed.

But wait, there’s more, it appears that I also have what is called laryngeal hypersensitivity syndrome. In other words, my eating system (technical term) thinks I’m choking with every bite and every swallow. Special.

We went home with an odd juxtaposition of good and bad bouncing through our heads. On the one hand, we have a plan to address part of the problem. On the other hand, I’ve had thrush before and realistically, it’s going take probably 6 to 9 months plus throat surgery to fix it.

The doctor we went to is in Ann Arbor - about 2 1/2 hours away. I think we’re going to get very familiar with that road

Thanks for walking this walk with me and with all of us.

TJ

#2

TJ

Someone “up there” has a really special journey set out for you, don’t they?

It seems a bit unfair but I think you’re one person who can be strong enough to get through it.

Missed you last week and I’m missing a couple of others, who probably know who they are, so I won’t call them out. I just want you all to know I’m rooting for you.

Best,

Richard

#3

Hey TJ, read your last week and I’m feeling for you. I thought I would throw something out there for you to look at, it’s called Gentian Violet. It stains everything but we used it when our son was having repetitive infections, and it worked wonders for him. I know of some who use it as a complimentary thing to prescriptions as well. Just a though as your waiting for follow up, but do have a read, it is interesting. Take Care, John.

#4

I never know whether to call you Dick or Richard - so maybe I’ll call you DD?

Thanks for the vote of confidence. Plain and simple, failure is not an option. I will change, I will adjust, I will grieve, I will not fail. I learned that from my Dad who beat cancer 5 times. The fifth time was when God called him home, but he defeated it. He defeated it by still being at work at the Seminary 2 weeks before he passed on to glory. He defeated it by writing two books and seeing them finished during the 15 months he was fighting cancer. He beat cancer by deciding when the complications from chemo made it time to stop and let go and go home. Next Saturday will be the 1 year anniversary of his going home. I miss him a lot but he’s taught me well…

TJ

#5

Dear TJ,

I just want to keep you up when you’re sounding down. Just like I like to pick anyone up when they are down.

I’ve got another book recommendation (which I’m not going to mail you this time and definitely not around the time of your dad’s passing) it’s not as good as learning things from your own dad. It’s called The Last Lecture by Randy Pausch. Essentially, it’s the story of the things he knows he wants to tell his kids but won’t because he gained a terminal prognosis from pancreatic cancer. It’s another on my list of commendable books.

And “Richard” or “Dick”, depending on my mood. I prefer to think “Dick by name, Richard by nature”! I signed up here as Dick but then felt it was a distracting name for you Americans – you might not treat me with much seriousness – so have signed myself Richard ever since.

Have a great week!

Richard

#6

I think I’m going to call you Rick. Or Hey You or Y’all or maybe Dick or Richard. We’ll see what shows up when the moment presents itself.

Yeah, I don’t think that a book about someone with pancreatic cancer which is the cancer my Dad had the fifth and final time would be something I should read right now. But keep them coming. The OT people tell me reading is good for me - even thought it’s a lot harder than writing it. Interesting.

Hats off to you and cheers for a good week.

TJ

#7

Hi TJ:

I think you must be a lot like your Dad … a strong, determined, kick-ass fighter who won’t-no-give-up"! If you can go through all you’ve been through, then I know I have a lot of fight left in me. Thank you for your post. I’m feeling better already! I’m keeping you in my prayers.

Sharon D…

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