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How did you keep your courage or faith in a trying time?

Thinking of you @nala I am not religious, but I find peace in knowing there are some things I can change/improve/fix and some things I can't. (See below) I arm myself with information and a plan when I can. Waiting for news is so hard, too. Hugs

God grant me the serenity
To accept the things I cannot change;
Courage to change the things I can;
And wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
 
I don't know if this will be of much help to you as my approach is pretty... blunt, I guess? Brusque? Can't think of a right word. What I tell myself is this:

"Well what am I supposed to do? Lie down and die?"

The only option is moving forward. Nothing is truly ever over, lost or hopeless, not until you're 6 feet under.

And right now the reality is what it is. You can't change it. You just don't know it. The only thing you can do is wait until you do. I know it's not everyone's cup of tea, but I find comfort in the knowledge that some things are just out of my control.

I sincerely hope we hear good news from you soon and this whole thing ends up being nothing more than just a terrible scare.
 
I am sending you good thoughts for a positive outcome to all of this.
 
Sending you best wishes and thoughts. I know during times like this imaginations go wild, and it's hard not to be overwhelmingly anxious.

Here are some things I can suggest

1. DONT GOOGLE! Google and WebMD are a disaster without enough info. Even if you Google "bad headache" you'll read something about a deadly brain tumor.

2. If the anxiety is debilitating, consider meds. They can help calm the racing thoughts and allow you to function and think clearly.

I am hoping that this is nothing to worry about.
 
I couldn’t sleep last night and couldn’t stop thinking about you. I prayed for you a whole lot and I almost wrote on here at 3 AM that you’re not alone - I’m sure you know that!

I am really happy to hear that your doctors are cautiously optimistic and I know the waiting and uncertainty and not knowing is the really really really hard part. Once you know what’s going on it’s easier to have a plan and deal with it.

I’ll continue to keep you in my prayers
 
Matata said:
Feeling scared, vulnerable, angry, sad, confused, frustrated and all the other emotions is how the mind copes with disturbing situations. Lean into all of those emotions as they happen because as you're experiencing them, your subconscious is preparing a game plan to help you cope in the long term but you need to work through those emotions in the short term. It's a similar process to coping with grief. The survival instinct baked into us won't let us succumb to grief and other difficult situations. Sooner or later the path through reveals itself and while it may not be an easy one, it is the one your subconscious has determined is the best way forward even if it means first hitting rock bottom.
Click to expand...

@Matata, Thank you immensely for this post.
 
Hi @nala
Thank for so bravely sharing with us what’s been going on. I can totally understand the feeling of reliving a nightmare over again and fearing the worst when you repeat a story. With it though, I feel I can provide more streamlined support, because I personally wouldn’t consider this a scenario where “this too shall pass” though I have been in so many scenarios where this mantra has gotten me through some really tough times.
When it comes to health scares, I’ve always encouraged my patients NOT to dig the internet, and do my best to build an appropriate rapport to convince them not to do so. It doesn’t sound like this was your experience. You were given a lot of false reassurance that further fueled your skepticism to lead you to where you are now.
While I am an absolutely advocate for the idea that knowledge is power, you also currently don’t know what you don’t know, and therefore speculation is not going to change where you currently are, and this is where mindfulness and being as present as possible can be the hardest thing to practice, but can be your lifeline.
I sincerely hope that the next steps will yield you more answers than questions, and remember that you always have the option for a second opinion, or even to switch providers! (GI and/or PCP) Especially if you feel unheard or unacknolwedged regarding your concerns. I also realize that even though this journey may be benign findings, you will be traumatized by this, and therefore seeking out some counseling, could be something to consider.
Big BIG hugs to you! And hope this can all be figured out soon!
 
Thinking of you @nala. I hope you were able to distract yourself doing something you love this weekend.
 
Come here, sit down with me.

I'm going to let you in on a secret since I've been dealing with my own courage, just lately. My mother died unexpectedly of a brain aneurism. It was immediate. We had no warning. I was 21 years old.
When they performed her autopsy they found that it would have been inoperable anyway.
She was only 53.
My sister has just gone through a brain surgery because she has always been the brave little toaster and had the scan. She never even has headaches. Well, they found one, they called it a widowmaker. It was a very invasive surgery, much more complicated than most. But she had talented surgeons and she will fully recover.
So the past few months I've had my heart in my throat, just waiting. Trying to be strong for her while internally fighting huge fear.

She is beyond precious to me. She's my kid sister. The layers to that statement are infinite.

I am going to be 46 this year. That's ever closer to 53. I'm a severe migraine sufferer with autoimmune and anxiety issues- so my adventure will maybe be a shitshow. Fun.
I know I need to go and find out where mine likely is. They're discovering with time that there is a genetic component and it is more commonly heritable than previously believed. I have no illusions of a clean scan. Hopefully, there is only one and in a place they can get to with all their advancements without making me a vegetable. There are no guarantees and I'm terrified after all the scans and the tests and the waiting that I'll to be told, 'We're so sorry, there's nothing we can do, it's like your mother's, but here's some thinners for forever and hopefully it holds.' and send me on my way with the clock ticking so loud I won't hear anything else. An expiry date. A death knell.
Perfect. Should I still ask for a lollipop?

I'll be Arya, laughing after she finally gets to the the Eyrie.
L9EO8D.gif


Every time my migraine is especially bad, I wonder, is this it? Screw the pooch did you, you stupid girl?

I've purposefully avoided all of it since my mother died, just in case. That was my cope, mostly. Terrified and thumbing my nose at it and decided to live my life for awhile. I finished school, married the boy she knew I would before I did, and had a family. She never got to see any of it. That is a cosmic sadness.
But, I lived.

In some ways I've made it harder on myself because I no longer have the advantage of youth. I guess I'm at a place where I've already had a pretty okay run. I've calmed. A little.
Foolish, I know, but we are not always rational when it comes to trauma. And fear.

I'm going to go this year. It's time. For my kids. I want to see all the things my mother couldn't. I want to be there if they inherited them, too. If it is there in mine, I hope it holds long enough for me to get out of my own damned way. I have shit to do.

Fear is a weird serpentine thing that coils in unexpected ways around your root and makes you behave in ways that don't make sense. Sometimes you just have to try muscle that ****er out the way the best you can. Maybe make fun of it for good measure on the way by. Cry. Laugh. Scream. Cry again. Get pissed. Lay in your bed for awhile in the dark. Be silent. Then, laugh again. Do it as much as you have to. But live as best you can, now. Tomorrow is tomorrow. Deal with tomorrow then.

It's okay to be scared. I'm scared too.
 
ItsMainelyYou said:
Come here, sit down with me.

I'm going to let you in on a secret since I've been dealing with my own courage, just lately. My mother died unexpectedly of a brain aneurism. It was immediate. We had no warning. I was 21 years old.
When they performed her autopsy they found that it would have been inoperable anyway.
She was only 53.
My sister has just gone through a brain surgery because she has always been the brave little toaster and had the scan. She never even has headaches. Well, they found one, they called it a widowmaker. It was a very invasive surgery, much more complicated than most. But she had talented surgeons and she will fully recover.
So the past few months I've had my heart in my throat, just waiting. Trying to be strong for her while internally fighting huge fear.

She is beyond precious to me. She's my kid sister. The layers to that statement are infinite.

I am going to be 46 this year. That's ever closer to 53. I'm a severe migraine sufferer with autoimmune and anxiety issues- so my adventure will maybe be a shitshow. Fun.
I know I need to go and find out where mine likely is. They're discovering with time that there is a genetic component and it is more commonly heritable than previously believed. I have no illusions of a clean scan. Hopefully, there is only one and in a place they can get to with all their advancements without making me a vegetable. There are no guarantees and I'm terrified after all the scans and the tests and the waiting that I'll to be told, 'We're so sorry, there's nothing we can do, it's like your mother's, but here's some thinners for forever and hopefully it holds.' and send me on my way with the clock ticking so loud I won't hear anything else. An expiry date. A death knell.
Perfect. Should I still ask for a lollipop?

I'll be Arya, laughing after she finally gets to the the Eyrie.
L9EO8D.gif


Every time my migraine is especially bad, I wonder, is this it? Screw the pooch did you, you stupid girl?

I've purposefully avoided all of it since my mother died, just in case. That was my cope, mostly. Terrified and thumbing my nose at it and decided to live my life for awhile. I finished school, married the boy she knew I would before I did, and had a family. She never got to see any of it. That is a cosmic sadness.
But, I lived.

In some ways I've made it harder on myself because I no longer have the advantage of youth. I guess I'm at a place where I've already had a pretty okay run. I've calmed. A little.
Foolish, I know, but we are not always rational when it comes to trauma. And fear.

I'm going to go this year. It's time. For my kids. I want to see all the things my mother couldn't. I want to be there if they inherited them, too. If it is there in mine, I hope it holds long enough for me to get out of my own damned way. I have shit to do.

Fear is a weird serpentine thing that coils in unexpected ways around your root and makes you behave in ways that don't make sense. Sometimes you just have to try muscle that ****er out the way the best you can. Maybe make fun of it for good measure on the way by. Cry. Laugh. Scream. Cry again. Get pissed. Lay in your bed for awhile in the dark. Be silent. Then, laugh again. Do it as much as you have to. But live as best you can, now. Tomorrow is tomorrow. Deal with tomorrow then.

It's okay to be scared. I'm scared too.
Click to expand...

Shut up you are not old, 46 is not old!
 
@ItsMainelyYou
I have no words to provide comfort for the terrifying experience you have been and are going through. I am
Literally balling as I read your
Post. Thank you for having the courage to share. You are so brave. I hope others chime in with wisdom or insight for you. Prayers outgoing.
 
Prayers and uplifting thoughts going out to you
 
nala said:
@ItsMainelyYou
I have no words to provide comfort for the terrifying experience you have been and are going through. I am
Literally balling as I read your
Post. Thank you for having the courage to share. You are so brave. I hope others chime in with wisdom or insight for you. Prayers outgoing.
Click to expand...

Oh honey, thank you, but we're here to hug and support you just now.
I just wanted you to know you're not alone.
You sat with me and you listened. That is enough. ((hugs))
 
ItsMainelyYou said:
Come here, sit down with me.

I'm going to let you in on a secret since I've been dealing with my own courage, just lately. My mother died unexpectedly of a brain aneurism. It was immediate. We had no warning. I was 21 years old.
When they performed her autopsy they found that it would have been inoperable anyway.
She was only 53.
My sister has just gone through a brain surgery because she has always been the brave little toaster and had the scan. She never even has headaches. Well, they found one, they called it a widowmaker. It was a very invasive surgery, much more complicated than most. But she had talented surgeons and she will fully recover.
So the past few months I've had my heart in my throat, just waiting. Trying to be strong for her while internally fighting huge fear.

She is beyond precious to me. She's my kid sister. The layers to that statement are infinite.

I am going to be 46 this year. That's ever closer to 53. I'm a severe migraine sufferer with autoimmune and anxiety issues- so my adventure will maybe be a shitshow. Fun.
I know I need to go and find out where mine likely is. They're discovering with time that there is a genetic component and it is more commonly heritable than previously believed. I have no illusions of a clean scan. Hopefully, there is only one and in a place they can get to with all their advancements without making me a vegetable. There are no guarantees and I'm terrified after all the scans and the tests and the waiting that I'll to be told, 'We're so sorry, there's nothing we can do, it's like your mother's, but here's some thinners for forever and hopefully it holds.' and send me on my way with the clock ticking so loud I won't hear anything else. An expiry date. A death knell.
Perfect. Should I still ask for a lollipop?

I'll be Arya, laughing after she finally gets to the the Eyrie.
L9EO8D.gif


Every time my migraine is especially bad, I wonder, is this it? Screw the pooch did you, you stupid girl?

I've purposefully avoided all of it since my mother died, just in case. That was my cope, mostly. Terrified and thumbing my nose at it and decided to live my life for awhile. I finished school, married the boy she knew I would before I did, and had a family. She never got to see any of it. That is a cosmic sadness.
But, I lived.

In some ways I've made it harder on myself because I no longer have the advantage of youth. I guess I'm at a place where I've already had a pretty okay run. I've calmed. A little.
Foolish, I know, but we are not always rational when it comes to trauma. And fear.

I'm going to go this year. It's time. For my kids. I want to see all the things my mother couldn't. I want to be there if they inherited them, too. If it is there in mine, I hope it holds long enough for me to get out of my own damned way. I have shit to do.

Fear is a weird serpentine thing that coils in unexpected ways around your root and makes you behave in ways that don't make sense. Sometimes you just have to try muscle that ****er out the way the best you can. Maybe make fun of it for good measure on the way by. Cry. Laugh. Scream. Cry again. Get pissed. Lay in your bed for awhile in the dark. Be silent. Then, laugh again. Do it as much as you have to. But live as best you can, now. Tomorrow is tomorrow. Deal with tomorrow then.

It's okay to be scared. I'm scared too.
Click to expand...

I'm so sorry that you're going through this. i know the pain of migraine, but at least I have no reason to believe mine will kill me. I can send nothing but internet hugs - unless you'd like some photos of vintage light fixtures to cheer you up? :)

It's so hard. When they isolated the gene for Huntington's disease, various people at risk, after trying for years to find it, chose not to be tested. It seems counterintuitive, but the problem is that if you carry the gene, that's it, you'll get the disease, and with a parent as carrier your odds are 50/50. I hope you'll be able to go for the MRI, and that if you need surgery it will give you freedom and a full recovery. Neurosurgery gets better and better.

And thank goodness your sister will make a full recovery. I'll be keeping you in my thoughts and hope that if you're willing that you'll update us with (I hope) good news.
 
Music. I cope with music. I used it recently after losing loved ones and I used it many years ago when I was very sick. I made the best scenario recovery and I say it was the music. I play an instrument and I sing. But listening works just as well. For the religiously inclined: I love to listen to and sing along to Taize chants. They are my kind of meditation.

Best wishes and best health and internet hugs to you all!
 
@nala and @ItsMainelyYou, I hope you know as long as you are here, you are never alone. In many ways this is our own little extended friend group. It’s often easier to share these feeling here versus with those in our real lives. Please just know we are here for you.

@nala, I wish you had a go fund me. I would love to donate to a Casino stash for you. Sometimes we just need to do things that are fun and make us happy to take our minds off everything else going on. Even if it’s only for a half an hour.
 
ItsMainelyYou said:
Old enough to know better, anyhow:lol:
Click to expand...

Just wanted to say I've read your whole post and that was all I could come up with at the moment (and I also believe it, I'm closer to 40 myself), I guess I'm not good with words sometimes. You are a very strong person. I wish you and your sister healing.

@nala been thinking about you all weekend
 
I am still thinking of you and praying so hard for you, and @ItsMainelyYou AND for the others who have shared their stories.

I realize that I think we all just have something that we struggle with, we are all strong in different places and times. And i think we are strong for people who need us to be. I bet you are the rock for your kids and your husband, you are strong when they need strength, so it's ok for you to fall apart a little for right now. You cant always be strong, sometimes you need to just lose control, i am so confident that you will regain your self and regroup when you have more information, it's OK to not be brave all the time.
 
During times of stress or bad news, I lean into activities or things that bring me joy. I can't distract myself all the time, but the more I do things that provide me with happiness, the less I focus on my own misery and fears.

My fingers are crossed for you.
 
Hope you get your test results quickly! Thinking of you!
 
Ty all for your positive thoughts and prayers. Yesterday I experienced my first MRI. I should know more news by tomorrow. Needless to say, it was another sleepless night. No matter how many times I repeat positive thoughts or prayers, my mind cannot accept these. Deep breaths. I have gone back to reread all your comments and they are very helpful.
 
nala said:
Ty all for your positive thoughts and prayers. Yesterday I experienced my first MRI. I should know more news by tomorrow. Needless to say, it was another sleepless night. No matter how many times I repeat positive thoughts or prayers, my mind cannot accept these. Deep breaths. I have gone back to reread all your comments and they are very helpful.
Click to expand...

Thinking of you. The waiting is the worst.
 
Hi @nala! Sending some calming vibes to you. It really is a process of baby steps and day-by-day, which is frustrating. Just know I'm thinking of you.

giphy.gif
 
Thank you all for your prayers! My doctor said the mass is benign! Everything else is normal! I will follow up with Gi on Tuesday. She told me to celebrate! I don’t want to give too many details bc I don’t want to go down another rabbit hole, but she said it is great news!! Thank you so much for all your support. I feel like I am living a dream right now!
 
What wonderful news, nala! I'm so relieved for you!
 
nala said:
Thank you all for your prayers! My doctor said the mass is benign! Everything else is normal! I will follow up with Gi on Tuesday. She told me to celebrate! I don’t want to give too many details bc I don’t want to go down another rabbit hole, but she said it is great news!! Thank you so much for all your support. I feel like I am living a dream right now!
Click to expand...

Yay!!!!! You made my day @nala so happy for you!!!
 
That's wonderful news @nala!!
 
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