Why I Haven't Died Yet..Again

[Druidcat]

Today I was at the store and a little boy saw me and started screaming. Yep..life with a facial hemagioma is a barrel of laughs. I wish sometimes that I had the luxury of just blending in...just once. I get constant stares and double takes. One person saw fit to throw raw eggs at me. I'm in a whiny mood, so I'm sorry for anyone who is reading. I have started neurofeedback at therapy and I'm not sure I like it. It makes my daily headache twice as bad.
But here is a weird story (like I have anything but weird stories)..
So I was born big, over ten pounds. I was a big child. My mom bought my jeans in the little boys "husky" department. By the time I got to high school and it was time to get my senior pictures taken, I was quite big. My dad told me I was hefty. So I go to the photographer to have the photos taken. He had one of those wicker chairs with the big round backs that was popular then. For some reason, he thought it would make a fun, casual photo if I tossed my leg over the arm of the chair. Except that I couldn't lift my leg. I had to hoist it over with my hands. I was so mortified! To top matters off, my mom had decided that I would look great with a perm. I have red hair, so I looked like fat orphan annie.
Weight problems run in my family..almost all the women in my family are big. My grandma had 9 kids and she was always trying to lose weight. Once she bought some weight loss shakes..except that she was under the impression that you were supposed to drink it in addition to your meal, not in place of it lolol
I am quite thin now, by normal standards. That comes of being a personal trainer and nutrition coach. I think having battled my own weight makes me much better at being empathetic to others who struggle.
Most people don't believe I was ever that fat girl. But she still lives in my head...

 

[mumstheword]

You've come so far! What an.inspiration you are!

Thank you for your take on ED's, I found that very useful and informative. I've battled (still am, but it's pretty mild now ) with a ED since I was 12. I'm 46 now.

I'm aghast that you've been.through so much and you've achieved so much!

Thank you for sharing your story.

 

[Druidcat]

Something I've been thinking a lot about lately is about my ptsd and how it relates to my current business life...People say all the time that I am somehow inspirational, strong or whatnot..not tooting my horn there, and i'm sure many of you have been told the same thing. Here's my feeling on that. I have never felt that I am anything special, that I am all that strong, or that I am some anomaly of human endurance. What I have (so far) accomplished is doable by any one of you:) That is what drives me to keep going, to have written my book, to keep pushing on my fitness business. I want to show that it's possible.
A lot of people may doubt my ability to be a fitness trainer, especially with a service dog. But I feel that it shows that you CAN do this..you don't have to let ptsd stop you from the rest of your life. Yes, I have ptsd. Yes, I have sturge weber and am being tested for autism. I have various skeletal problems including scoliosis and have chronic pain. I've had a tbi.
But I also lift weights every day and am a business owner and writer. :)
One doesn't absolve the other.
I think the secret, and I am learning this more each day, is learning to see my body as a tool, in all its weaknesses and strengths.
My ptsd and physical limitations are but a small facet of who I am. I may not be capable of running or jumping, but I sure as heck can train you to do deadlifts.
I may still struggle with panic attacks and I will never be able to drive, but I can teach you how to cook for the autoimmune diet.
What I'm saying is that if we can find what we ARE capable of instead of what we can't do, we can still achieve happiness.
I have two stepsons, one has autism and cerebral palsy. The other has schizophrenia and fragile x syndrome. So my house is well acquainted with oddities and sometimes I feel very bad for my hubby for putting up with all of us, plus a cat, new puppy and a snake.
It's a riotous household sometimes.
In the coming year, I keep setting small goals for myself that i know I can achieve despite my physical hurdles. I aim to double my deadlift weight by the end of the year. I aim to have a video channel for exercise and cooking videos. I aim to be totally back to studio teaching by the summer. Do I expect that my ptsd will just magically disappear despite happiness gained? Probably not.
I have been dealing with this for around 20 years now. And even in happy times, it still simmers under the surface. I don't think it's necessarily something that goes away. I certainly know my physical things are not going anywhere. So i know this is something that I will likely deal with for the rest of my days.
I guess I'm okay with that. Life is a journey.

 

[KwanYingirl]

You have done a lot of work on yourself. I betvevery time you lift a weight it counteracts a sorrow. I am the opposite, but on a parallel. I was always stick thin until I was put on atypical antipsychotics and I gained 50 pounds. I’ve lost the will to work out. It’s one thing to lose weight, but another to be transformed so completely. You’re awesome!

 

[Druidcat]

Blah. I have to go to therapy tomorrow. I'm starting to dread it already. I'm not a fan of the neurofeedback. It seems pointless to me and it gives me a headache. I feel like my whole time is spent sitting there looking at a stupid screen. I loathe my part time job as well. People think I'm rather a lonely person, but I'm actually not. The truth is, and I hesitate to say this because it makes me feel like a nut, but I never have craved human interaction. My parents used to punish me as a kid by making me come out of my room! I have a social media profile, but I do not have a friend list. I don't go out with friends, because I don't have any. My husband is it. Sometimes I wonder how I am married, even. And I'm having a hard time working because, well..every job I get sucks because I have to talk to people. I dread the interaction. I count the hours until I can once again be alone at home. I even dread the therapist for the same reason. I don't really have a desire to talk to her. It's not just being shy. It's that human interaction makes me highly anxious, panicky even. I still don't know exactly what my doc thinks is additionally wrong, she says she is thinking of a few diagnosis that fit me, but she has yet to clarify that. I'm amazed I had the nerve to actually write a book. I'm not sure where that even came from. Sometimes I'm scared to death that my whole story is out there for any person to read and formulate an opinion of me on.
I feel so much that I have two personas..one of the business owner, writer and trainer, who smiles and is outgoing and happy. But then, there's the real me, the obsessive, neurotic one who has to do everything on a schedule and will throw out the whole day as ruined if the schedule gets funked up.
And I'm not sure that I'm getting better..in fact, I feel like I'm getting worse with age. Even though I'm working hard at my business, I feel my facade slipping. I'm getting more and more worried about dumb things like death and old age..my birthday is in a few weeks and it's freaking me out. My very age makes me feel panicky. I'm so jealous of the young that I can barely look at them. I think that is why I'm feeling so much worse lately..I'm starting to worry about very serious things, like what happens after I die. I was raised as a pastor's kid, so I was taught to believe in heaven and hell. But my experiences very seriously rocked my beliefs and I've spent the last 20 years questioning, outright hating, or ignoring. I just can't come to terms with the idea that there is a plan in all this..there can't be.
The things that have happened to me, and some of the stories I read here, are just chaos, they are unbelievable and bizarre at times. I was taught that we are never sent more than we can bear. I no longer believe that.
Heavy stuff for a Sunday morning:)
I get my service dog, finally, in about a month. I have fought getting one for a long time. I hope he helps to bring me out of my internal world of ptsd. But I'm also stressing over being brought out of it. It's my safe place, my shelter and sanctuary. It's the only place I don't get hurt, deserted, left or yelled at.
Ah well. I think I will go stare into the big yellow eyes of my cat, Olive. And listen to her purr.

 

[KwanYingirl]

My dogs are my favorite living beings. Also an introvert, can’t stand being one on one with my t. It took a long time to be able to raise my head and look him in the eye. Nows the time to get your home ready for your dog. Give yourself the freedom to bond with him. Don’t overthink it. He’s been trained so try to trust his instincts.

 

[Druidcat]

You know you are stressed when you stress about happy things. As I've mentioned, I am getting a service puppy next month. I am owner training, he is being trained by me. yeahhhhhh. That causes anxiety attacks. I can't even train myself to keep my face out of the toilet. Blah. Blah blah blah. Why is this so hard? I thought getting therapy and working on ptsd was supposed to get easier, not harder. It seems like every time I go to get help, the obstinate german in me wakes up and just starts lashing out and refusing everything.
I tried emdr too, last week. All I could think about was my mom. That's the odd thing that has come up in therapy. You would think that losing all 3 of my kids would be the outstanding trauma. But every time someone tells me to think of my trauma, it's my mom that my brain brings up. And I'm struggling with that. I have a very literal brain because of my tbi. I don't understand lofty, ethereal ideas like "embrace your pain" or "confront it" or whatever jargon my t wants to throw at me. I just feel like saying..Okay, my mom tried to give me away when I was 13. She told me when I was raped that I asked for it. When I had pre-cancer, she used tongs to pick up my clothes so that she wouldn't catch anything. She weighed me naked in the garage and made fun of how fat I was. She accused me of doing things with my own dad. And she made me deny the existence of a child i miscarried. So doc...just WHAT are the steps, the concrete steps to forget or do away with all that? I know I sound feisty, and I'm not trying to be. I'm just struggling with these concepts. I have forgotten a ton of things because of my tbi, but unfortunately, those things remain crystal clear. Forgive myself..forgive her..move on..I don't know the literal steps to do these things. They sound as foreign to me as the concept of string theory sounds to most people. So I go to my t and watch a boring town on a screen and a bouncing ball instead.
One of the odd things with my ptsd is that I do not get nightmares. Most people will think that's a blessing. It's not, really. I haven't been able to remember dreams since my tbi. I do, however, have very vivid..daydreams? I'll be sitting there, reliving things so hard that I almost forget time and my body just stiffens up. Then, later, I realize I'm sitting there stiff as a board and I shake myself out of it. It makes my neck and shoulders very sore and I have tmj from that and my crappy eating habits.
So even though I don't dream, I have these weird vivid daytime things. I find myself trying to remember every detail of my kids. One of my deepest fears is forgetting what they look like- as I've mentioned, i have not one picture of my kids, because my family took them all and will not let me have any. And with my tbi, I'm tremendously afraid that my brain will just someday lose the picture I have stored inside.
Sometimes our heads store weird things. In my fear of neurofeedback, my brain drummed up something from my childhood that may make some of you laugh (I'm not actually sure if anyone reads this, because I am too anxious to read replies)..anywhooo..back when I was a wee kid, the Muppet Movie came out. If any of you have ever seen it, there is this scene where Doc Hopper has decided to kill Kermit the Frog because he won't be a spokesperson. So they strap Kermit into a chair and shock his brain with something that they say will render his brain totally useless.
So...there you have it. Every time I go for neurofeedback, I see Kermit in my head. And I've privately nicknamed my t Doc Hopper. You gotta laugh at yourself sometimes. :)

 

[Druidcat]

So this is a crappy week. My t forgot that I had an appointment. So I never went.
My manager at my part time job quit, leaving me and one other person to flounder in all the piled up work. It's just assumed that I am going to pick up where she left off, until they find someone else. Isn't that insulting, kind of? Like, okay, you can do her job until we find someone who can do her job.
But the odd thing is, I'm feeling kind of apathetic and I don't even really want her job, so I'm not sure why it insults me.
It just might have been nice to be asked. I want to go back to my own business, but I'm still having numbness in my leg. I've had numerous mri and x rays. They never find anything other than I have scoliosis, but not enough to be causing numbness.
I'm feeling overwhelmed and underwhelmed all at once.
And last night, my dear hubby did something which, while I get that he had good motives, it also triggered me tremendously.
He secretly messaged my sister, whom I haven't spoken to in years, and asked her to send him pictures of my kids so that he could give them to me. Now why this is so important is that I have not had any pictures of my kids at all since their deaths. My family refused to give me any.
And since my tbi, I have had tremendous panic over the fear of forgetting what they look like.
So I know he had good motives.
But seeing their faces so unexpectedly..he gave me the pictures as a surprise over dinner...brought all of that emotion back. I burst into tears at the sight of their faces that I haven't seen in so long. And it brought all those memories, good and bad, rushing back into my head, heart, muscles and bones. My body feels like it did right after it all happened.
I feel everything, yet I feel nothing. I want to sit here and stare at my gaming pc, and hug my stuffed lion. (my best friend is a stuffed lion who accompanies me everywhere)
And now I have this weird expectation from my sister that all is well and good between us. And it's not.
This may sound really hard and cold, but I am not ready to forgive her yet. She doesn't even realize she hurt me by saying that I hadn't died yet and that she felt that I was demon-possessed when I had an eating disorder.
So I'm not feeling equipped to deal with that.
And my birthday is soon. Yuck, yuck, yucko. The older I get, the worse this gets.
My parents never wanted me to go to college, although I attended for two years at the age of 35, until I had my tbi and had to drop out because I was unable to read. They never allowed me to stay at friends' houses, or play out in the street with the other kids. I never owned a barbie (too anatomical, my parents said), wasn't allowed to listen to anything but gospel music, and I wasn't allowed to take gymnastics, sports, and I didn't ride a bicycle til I was 14. My parents didnt teach me to drive. My first date was when I was 20.
Where am i going with this? well..sometimes I feel irritable at them when I think about my birthday. I know it is up to me to do something with my life. But sometimes i get angry at my parents for not teaching me how to do that. All my parents told me about growing up and being an adult was that I could get a little job and maybe someday, if I was lucky, "some man would want me."
And now, here I am, approaching middle age, and I am terrified of my own business. I'm going to a t and getting a service dog. I have managed to write a book, but I doubt anyone other than one coworker has read it.
And I feel like I blew it.
Blah, I am sorry to anyone reading this that I am in the doldrums. Seeing my kids' pics just put me in a weird, anxious place.
Think I will go do some gaming- I'm a die hard warcraft junkie.

 

[Druidcat]

My husband said to me yesterday that he feels my anxiety is getting worse..and i know this is true. I stopped wearing makeup to cover my birthmark a few months back. While on one side, it feels good because I no longer hide my true self, on the other hand, it has made me entirely self conscious. I have gotten many many more double takes, stares, a little kid yelled in fright when he saw me..
it's just made me much more aware of myself. I give my wallet to my husband to buy things for me because I no longer feel comfortable in lines.
And then, on the inside, I find it is hard to have invisible illnesses. My work now thinks I can work 42 hours a week. Aside from my birthmark, which everyone wrongly assumes is "just a birthmark", they think I am fine and functional and capable. And I feel anything but capable. I have a lot of pain and numbness, which still goes undiagnosed after two years.
My tbi makes it hard for me to envision things or understand things that I haven't seen in person.
And most of us know how invisible ptsd can feel. No one is aware of the fight that goes on inside still.
I feel numb. I don't really feel any strong emotions about anything. I just feel flat. Nothing really excites or enthuses me anymore.
I have a hard time feeling love, empathy or attachment of any sort, and I'm not sure why. Yet I feel angry. Angry at me.
Angry at all the stupid mistakes I've made, time I've wasted. Years, even.
I don't like to be touched. I can accept hugs from my husband, but that is it. And I worry about him. I worry about our relationship, that he is just going to get fed up and leave, like everyone else has. But I'm not sure how to salvage it. We don't fight. We just live very separate lives. We go to bed at different hours, we pass like ships in the night.
I'm not even sure I want this service dog. I just don't want anything right now, except to sit and rest. It's weird and not like me.
I don't really want to leave the house. I'm craving peace and quiet and stillness and blankets and safety.
I want to hide and feel secure.
My inlaws know about my eating issues and have asked why, in light of all this, I don't apply for disability. One of the glaring problems with the system at large is that to qualify for it for an ed, your bmi must be below 17.5. That's just horrible in my eyes.
Most bulimics are not overweight..most of us are average or overweight, in fact. So I think it just continues that feeling that I'm just not sick enough to warrant help. So I keep saying I'm fine, even though I feel like I'm falling apart on the inside.
I keep thinking of what my sister said..you haven't died yet. And sometimes I wonder, is that what it takes for you to care?

 

[Empty Shell]

Today I was at the store and a little boy saw me and started screaming. Yep..life with a facial hemagioma is a barrel of laughs. I wish sometimes that I had the luxury of just blending in...just once. I get constant stares and double takes. One person saw fit to throw raw eggs at me. I'm in a whiny mood, so I'm sorry for anyone who is reading. I have started neurofeedback at therapy and I'm not sure I like it. It makes my daily headache twice as bad.
But here is a weird story (like I have anything but weird stories)..
So I was born big, over ten pounds. I was a big child. My mom bought my jeans in the little boys "husky" department. By the time I got to high school and it was time to get my senior pictures taken, I was quite big. My dad told me I was hefty. So I go to the photographer to have the photos taken. He had one of those wicker chairs with the big round backs that was popular then. For some reason, he thought it would make a fun, casual photo if I tossed my leg over the arm of the chair. Except that I couldn't lift my leg. I had to hoist it over with my hands. I was so mortified! To top matters off, my mom had decided that I would look great with a perm. I have red hair, so I looked like fat orphan annie.
Weight problems run in my family..almost all the women in my family are big. My grandma had 9 kids and she was always trying to lose weight. Once she bought some weight loss shakes..except that she was under the impression that you were supposed to drink it in addition to your meal, not in place of it lolol
I am quite thin now, by normal standards. That comes of being a personal trainer and nutrition coach. I think having battled my own weight makes me much better at being empathetic to others who struggle.
Most people don't believe I was ever that fat girl. But she still lives in my head...

Oh my. First off, congratulations on your weight loss, and your new life of making better choices in that arena! I totally relate. My Mom called me her "big boned girl" probably because I didn't fit into one shirt or something. I look at my kindergarten class picture, I'm close to being the smallest girl in our class. Twiggy was my idol from 5 on up. I did gymnastics, cheerleading, running....I NEVER had a weight problem! I wanted to be a twiggy but doing gymnastics, etc does not make a twiggy body!! However, IN MY HEAD I WAS FAT!!! I literally had a perfect figure and hid it pretty much always. Big shirts - both for hiding weight and my body.
Good luck on this journey.

 

[Juso]

@Druidcat
God, I don't even have the words to appropriately react to your story. I am in awe of your incredible strength. How did you do it? I know you don't get why people think you're brave but honestly your resilience is extramundane. I think you are a wise and interesting, so thank you so much for sharing your life with us.
Also, I am glad you have such a gentle husband.

We go to bed at different hours, we pass like ships in the night.

Although this is so sad, it is beautifully written. You are creating such an exceptional atmosphere with your words.

 

[Druidcat]

I've come to the realization that I don't feel anything. I just feel..flat. Even in therapy, my t will sometimes ask me to tell her about some of my stories, and I will tell her, just like I was telling someone the weather outside today. I don't really feel any emotion, good or bad, happy or sad. I find I don't really have a range of emotions anymore, it's just blah, blahher and more blah. It makes me feel strange, like I wonder if there's something wrong with me that I don't feel any strong emotions anymore. I don't cry anymore. The last time I laughed was when I got a toy in warcraft that made my toon have gas.
And this week, I had this weird thing of not talking. I wasn't mad at anyone at my work. But I just felt like I couldn't talk..like I wasn't capable of it. Like it caused pain to do so. I think I said four words all week. It felt restful to my spirit to just be silent. But I couldn't explain to my coworkers why, so they just think I'm rude. I'm not sure what this is called, but I have had it throughout my life. Just periods of time that I just couldn't talk.
My t keeps hinting around at "other diagnoses that fit" ..that bothers me. What the heck is she thinking?
I feel the need to unload some yucky stuff about my ed...so if you have a weak stomach, you might just want to scroll on by:)
Right after my youngest daughter passed away, I became very bad about my eating. I worked at a grocery store, of all things, so I would buy food every night. I would eat it all by myself, while everyone was asleep. Then I would use any and every utensil I could get my hands on to make sure I got all of it out. I would tie cords around my stomach, wrap myself in plastic wrap and walk around the neighborhood for hours trying to work all the pounds off. I had a bad laxative habit. I also had a coworker who was a kleptomaniac, so she would give me pointers on how to put a large pizza under my hoodie while she was taking deodorant and soap. But still..all this didn't come from the death of my kids. It was before that..something going way back to when I was a kid..something I can't even put my finger on. I remember hiding in the bathroom to eat my lunch at school, because for some reason I didn't want anyone to see me eat. My one and only friend attended my dad's church with her mom. They used to come to the church holiday dinners. Her and I would pile our plates full while no one was looking and hide in the bathroom to stuff ourselves. So I'm not exactly sure where my problem with food began.
I'm sitting here and beside me is my stuffed lion, Anduin. He has been my best friend for four years now. He goes with me everywhere. Tomorrow is my birthday and I'm 40 something something. And my best friend is a lion.
While I get, on some remote level, that there is something strange about that, I'm not sure I care. I have never had much of an attachment to humans. I see other women texting, chatting on their phones, and having coffee with lady friends. I don't even own a phone. I'm scared to death to go shopping alone.
My husband forgot to announce his arrival home loudly the other day and I was sitting there gaming and all of a sudden, I look to my side and he's standing there. Even though my brain knew it was him, my body thought I was being attacked, and I had the loudest panic attack ever, crying very loudly, shaking and rocking back and forth. My poor hubby rolled his eyes and left the room because he knows there's no use in trying to stop my panic attacks once they start.
But that's what I mean, in that, I know something is just not kosher about this.
I read somewhere that when you experience trauma, you stop growing emotionally and are stuck at the age that the trauma happened.This seems to be very true in my case. I was in my 20s when a lot of this happened, my 30s when I had my tbi and my last car accident was 2 years ago. And I feel oddly stuck at 20. I feel super bad for my hubby. I'm not sure he knew what he was getting in to when he decided to get to know me. The year before we got married, while we were engaged, he sent nude pics of himself to his ex and was flirting with his coworker. He said he needed to "vent"..he told her he hated his life and I was the b-word.
Now..we have tried to mend fences and I try hard not to mention it.
But in light of one man putting me in the mental ward and another needing to "vent", I do not feel the most trust in men.
My ex husband hit me once, so hard that I lost my hearing for 3 days. So I just don't know. I have this fear that before I can resolve this ptsd, my husband will get sick of me. Maybe he just wants a nice normal wife. I wouldn't blame him, really. And I deeply wish that I could be that for him. But instead, I am a moody, black-wearing gamer who listens to metal and carts around a stuffed lion. And can't keep down anything she eats, nor drive, answer the phone or be in a checkout. It worries me. I wish he did have some form of venting that was healthy, because I know I cannot be easy to live with.
Well, crap. I have to go to therapy in 20 minutes. Neurofeedback is still not doing anything but giving me nasty headaches, but she says to keep going. So I will go.