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AVM Survivors Network

A Case of the "Why Me's?"

#1

I don’t think it’s contagious.

But I don’t think my doctor knows how to cure it.

I don’t think it’s terminal - unless it is consistently ignored over a long period of time.

It doesn’t cause pain.

But it is pain.

It can be said to be a medical condition.

But I think a pastor, priest, counselor or therapist is better equipped to help get rid of it than a doctor.

This week Friday, my wife and I will be driving to Ann Arbor to the University of Michigan hospital. When we get there, my doctor will be “doing” throat surgery to begin the process of getting rid of the worst throat infection he’s ever seen.

Yeah, that’s right. Oh, and he is “the specialist” at an institution that is ranked in the top 10 in the United States for dealing with throat/voice issues. He had to consult with his infectious disease docs to figure out what to do about it. Yeah, I’m that special. Yippee! (NOT)

Why me?

Why have I had to deal with this thing for 41 years now?

Why me?

Why have I been unable to work since January of last year - and no sign of that changing soon.

Why me?

Why?

Yeah, I’ve got a case of the “why me’s?” this week. And the closer we get to Friday, the more it seems to bubble to the top.

But I also think I’ve got two different variations of “the why me” affliction. There’s the “it’s not fair, this sucks, I really don’t want to be the one who has to deal with all of this stuff.” I’ve definitely been battling that one for a while. And I haven’t beaten it, but it hasn’t beaten me either.

There’s another “why me” strain that I’m starting to recognize more clearly. “Why me?” There are so many people in the world and this is all so rare, why am I the one who got this? What’s the reason? What doors does this open for me to make a difference that wouldn’t have otherwise?

Why me? I dare say all of us who hang out on here don’t all come from the same viewpoint in terms of religion, but I’m just going to say it, “I’m a Christian and I believe that God uses tough things to open doors and to create opportunities for people to make a difference in the world.”

So, why me? Why do I have to go to Ann Arbor to get a whole bunch of, well let’s just say throat surgery this Friday?

But also, why me? Why am I where I am and how can I make lemonade out of the lemons that I’ve been given?

If you’re of the praying sort, your prayers would be appreciated on Friday. The last surgery (January of 2018) had a lot of unexpected outcomes, so the apprehension levels are higher than normal this time.

Thanks for listening,

TJ

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#2

You will be in my prayers on Friday for sure! I’m not that good at staying “in touch”, but I have started jogging outside as spring is sort of here…I jog by a little church that us over 100 years old. As I go by, it reminds me and I say a little prayer. So you will be at the top of that list! The best to you on Friday! Take Care, John.

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#3

100 years old - think of the stories and prayers that have come through that church. We live in a house that’s 120 years old and I love thinking about all of the history that has lived through here. The history - this house was here when Kennedy and MLK Jr. Were shot. The day Pearl Harbor was bombed, the day the Titantic sank.

Thanks for the prayers.

TJ

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#4

Sorry TJ, I’m not the praying type BUT I will be thinking of you come Friday.

The ‘Why Me’s’, I believe for all of us with rare conditions, we all have some level of this. For me I know keeping going over and over and ov… just doesn’t help, in fact, for me it makes things worse. I know I too have surgery coming up in the not too distant future and if the medicos had completed the WHOLE task last time round instead of doing 1/2 the job, I wouldn’t be looking at another operation. Now I can go over and over this fact or say ‘It’s out of my control’ and it is totally out of my control. If I can’t control it then I have to let it go.
People are gonna hate me, BUT I keep going back to the serenity prayer:

Grant me the serenity to accept the things I cannot change
Courage to change the things I can and the
Wisdom to know the difference.

If I can change it, then do it, get it done. But when it’s all out of my control I have no choice in the matter. I have to hand it all over to a higher power, the dr’s. Well 90% think they are a higher power anyway lol
Tom, I can completely understand where the ‘why me?’ comes from, but when I have no control, I did not make a choice to be ‘here’ and I cannot change the predicament I am in, asking why me? doesn’t do me any good. In fact it can (and has before) send me into a downward spiral. Never good. So I try not to go there.

Merl from the Moderator Support Team

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#5

I agree with you; I do have the pity parties from time to time but at the end of the day if I have control over it I try to change it if I don’t, I just take a deep breath and try to accept it. no sense dwelling on something I have no control over.
Sometimes this is easier said than done but for the most part I’ve learned to accept my issues.

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#6

Tom,

You’ve touched my life, which would never have happened without us both being in this predicament, and I would say you’ve touched the lives of others here. This adds value to us, and I hope you. Plus, you’re an able writer. To be able to tell a story with a bit of style, maybe metre.

Richard

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#7

Thinking of you Tom, hope all went as planned today. My best to you and family, John.

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#8

You guys touch me, deeply. I wrote this just to share what I’m going through because I believe that transparency helps with healing. Instead I get moved to tears by you guys.

Things went about as well as could be expected. Most of the infection was removed and they sent it in for analysis to determine for sure what the best type of medical treatment (aka meds) will help make sure it is gone and make sure that it doesn’t come back. I’ve learned very quickly since coming to afterwards that if I try to swallow (except for cold drinks or shakes) and if I try to talk, it raises the pain levels up a LOT and make me start coughing a lot. As my daughter, Dr. V said, “Dad, don’t talk, text.”

The discharge instructions said that I should plan on spending the next week talking as little as possible, avoiding situations where I would have to talk loudly (did they not know I have three dogs and two teenager?), avoid talking on the phone (I already do that) and eating soft food and drinking cold drinks.

As I told my brothers last night, this is basically a successful step one in getting rid of the infection:

  1. Remove as much as possible surgically so that the meds have a chance to finish it up.
  2. Verify what type of infection it is to make sure we are using the right pharmaceuticals. Doc says he is 95% certain what type it is but that’s not good enough for him.
  3. Treat it with a 4 to 6 week course of meds.
  4. Verify that it is gone

And then move on to other things like voice therapy. None of this will reduce the paralysis in my left vocal cord, but it is all aimed at making the most of what I have in terms of function so that I can speak, breathe, eat (you know those major life essentials) as well as possible given the baseline of what is there.

In 16 months, this is the first time since we realized we had big issues to deal with that a doctor said something other than, “there’s really nothing that can be done.” Dr M said yesterday, “We’ve successfully completed Step 1.” Now we work on being quiet and healing this week.

Oh and my doctor said I had to tell my kids that I get total control over the TV remote and the Netflix account all weekend. And I happen to be a golf nut (haven’t played in 10 years but still like it) and the Masters is on this weekend.

Thanks for caring. You all touch me deeply and it is valued highly.

TJ

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#9

Wishing you all the best, Tom. Have a great Easter.

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#10

When I had breast cancer at 48, I was beset with the " Why me?"s. Then one day I thought “Why not me?”. Why was my core belief that
Awful things should never happen to me?
TJ, I know you are strong and recovering. I just wanted to share the above statement for the next AVMer. I need all my resources for my AVM now, so I do not waste energy with the “Why me?” s. I am a 15 yr cancer survivor, and will muddle thru life another 30 yrs + with this recurrent VM. But I am preaching to the choir here. All the best, er. Andrea

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#11

E & A,

Thanks for sharing that. You are absolutely right about a couple of things that you said:

  • Why not me? That question then brings us closer to a theological discussion of the nature of right and wrong, good and evil, sickness and health. I am not quite 48 hours post anesthesia. I’m not ready to go there right now. :slight_smile:
  • As my counselor and I have discussed quite often, I will get through this, I will manage and rethink and redo my life to adjust to the necessary things that this has thrown at me. But we’ve also talked about how it is okay to be down, it’s okay to get mad at God - part of which is the “Why Me?” Questions. To quote Dueteronomy 30 (that I literally read about 10 minutes ago in personal devotions, “God, my God…” Yes, He is and because he is, I can bring the good, the angry, the happy, the sad to him.

One more thought - it intrigues me that you say that your core belief was that awful things should never happen to me. I think that a large part of the evangelical church in America is sold the bill of goods that says Christianity is a pathway to an easy life, and I thing that accentuates the amount of “why me” questions that get asked.

I’m convinced that one of the reasons I’m still standing and still living a life that tries to make a difference is because I’ve wrestled with the big questions and I’m beating them. Not past tense, they are still big questions, but I’m beating them.

tips hat and thank you for joining the conversation and yes I write on here for my own good - but also for people who are coming behind me - to share what I’ve learned and how I’m answering the questions we all face at some point.

TJ

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#12

TJ, I hope you know I was sharing my personal struggles and not proselytizing! Your writings inspired me to join the conversation. You have a depth of soul that is rare… I just relate and spoke my thoughts. I look forward to future dialogue online. It helps to look at our day-to-day chronic struggles with the loftiness you describe so well. I had VM procedure 6 wks ago, I hope you are soon in the recovery state I am. #13 was the charm! I live in the present b/c collateral pathways may open in 6 months. Grandkids are visiting today! Er

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#13

I have very often been angry at God, similar to Job in the bible. And He accepts that. I am sure you have read " When Bad Things Happen to Good People". The universe is random, in exchange for humanity having " free will". But sometimes I go to a dark place where I indulge in self-pity. Right now, I am unencumbered by physical pain and real depression. Perhaps a little too jovial for a person 48 hrs post-procedure, haha. Keep the faith, my friend.

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#14

…I write on here for my own good - but also for people who are coming behind me - to share what I’ve learned and how I’m answering the questions we all face at some point.

Ahh, now, that is something I can totally relate to. Although sharing can be and is beneficial to us the writers. It can also be of huge benefit to others taking this awful journey. And that’s what these pages are all about.

Merl from the Moderator Support Team

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