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The Beginning.

Just getting started

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So, this is my first blog post that I’m doing. I guess this is good idea to start out with who I am and what I hope to be sharing with the people who read this.

So the basics, I’m Angel, short for Angela. I’m almost forty and according to my friends, I have a story or fifty to tell so after years of being told that I should write things down, to share things I’ve learned or.. experienced, I’m finally doing it.

Stories are not gonna be coming in any set timeline, so just be warned. Some are reposts from posts I have on Facebook, some with paintings. No last names will be used to protect the innocent, guilty and what not.

Basics: I’m married, no kids and I have a 4.5 pound almost 2 year old fur baby named Purgatory, Purgs for short.

For hint of things to come: Survivor of Child abuse (sexual, physical, emotional.) Survivor of Cancer, and of necrotizing fasciitis & septic shock.

So, there it is.. the beginning… more to come.

Does it steal your soul?

So, it’s 6 35 am on December 16, 2018.

I’m listening to music on YouTube, reading Facebook, trying to get sleep.

Then, I read a blog post from a ten year survivor of NF, and I read it once, then twice then I have to pause to think, to consider her question to the group I am in that supports mentally, survivors of NF and caretakers and mourn those who did not make it.

Her question, which I am sure you want to know was this:

How is it that it takes a part of your soul, too?

I had to pause, and think about this for a minute and I realized the question was wrong.

The Question be:

How do we keep going when it steals apart of your soul?”

I say that is the question I need to ask, because, I know part of me is gone, and I’m never getting it back, not the way I was before.

Now before anyone thinks I’m being poor pitiful me, you can just toss that idea out.

This is me, telling you my story, my feeling.. how I feel about all of this.

I’ll put it like this:

Before, I was a pretty vibrant, active human being. I could get two weeks of food in 45 minutes solo at Wal-mart easy, no help. I could even put everything away solo. I could easily do the dishes, do the laundry, pick my cat up with no strain. I was able to walk to Jon market for something, and I could even easier walk tot he farmer’ market to by fancy goat cheese and a snow cone. I could clean my old apartment solo and run and get the mail. I could go to Ren fair with out worrying out my body is going to function while I’m there and my biggest worry for a day trip was keeping an inhaler in case something goes wrong. I was loosing weight, and wearing my first ever designer jeans, and sporting bold two toned blue hair and I was looking forward to going swimming with people a month later right before my 39th birthday. I had no worries and I was happy.

Then I died, NF came, Sepic shock… and every thing went insane.

Now: It’s a daily routine of countless meds, and needles and dealing with pain, and gritting my teeth and pretend everything is good when the pain is almost too much to bear. I fight depression and feeling as if I’m not worthy of the fact Iam here when so many did not make it. Walking hurts, my cane is always close by forlonger things, Walmart is still on the power cart because It’s too much to go though walmart solo yet.

Good things to have discovered: My strength is real, and I’ve earned it. I finally believe I am tenacious, as my friend Carolyn has said for literally years now. I have a good strong group of friends who actually love me and support me and have my back even when I’m in the weeds. My marriage is strong, and my partner in my life has never stopped being here, though out the roller coaster ride. I no longer care if anyone likes me, as long as I like me.

Things that hasn’t changed:

I am a smart ass, sassy, swearing, unicorn loving glitter wearing diva of awesome. I am still a pagan who loves her patrons dearly, and respects them. I still like Taylor swift songs and dancing in my office, just now, it’s in my chair.

The question was” how does it steal part of your soul?”

my question was” how can it not?”

In my case, I died. Organs began to fail, parts of my body were removed as my cells betrayed their normal purpose and mutated to try and keep me dead.

I firmly believe that death, and returning from it, changes who you are, changes how you see things. I appreciate things I took for granted before; Things like rain, walking, showers, lipstick. Before, I took things for granted, and let things bother me faster. Now, if a pan get burnt or I burn cookies, I shrug it off, cause over all..it’s not that big of a deal anymore.

I also want more out of life, not just for me but for others now, because I have realized how fucking lucky and blessed I am to be here.

So yes, NF stole part of my soul, however I think that missing piece made me be grateful for what I have left.

NF has taken so much from me, but what is left, is stronger, braver a hell of lot tougher because I’ve seen the worst place for a human to be at, and unlike so many others, I’m still here, and I’m still fighting.

I won’t say I am not bruised or not tired on more days then I want to admit to. I have scars, and wounds that may never heal from all of the fighting to be. However, my scars show I lived. My bruises, cuts scrapes and open wounds show I am not giving up. My tears show I still have a human heart that feels for others and yes, mourns for losts both personal and of the world left behind.

So the answer to my question, how can it not steal part of your soul? The answer is clear: It did, it does.

The question is now, what do you do with what you have left?

Two years later

Warning: Long rambling post.

Two years ago:
My life literally ended. I died, but I came back, twice.

My life changed. I had no choice on the matter. you die, things have to change one way or the other.

I had necrotizing fasciitis and septic shock with organ failure. There are (roughly) 325.7 million people in the United states. There are 20,000 necrotizing fasciitis cases a year. Only 3,700 of them survive. One of them was me.

A month in various hospital rooms, of needles of being mostly dead, drugged, racked in pain, and fight to just live. Of surgeries, and needles and nurses and blood work and my body being pumped with so many things I can’t even remember them all. Of blood transfusions, and IV’s and not knowing at times if I was ever going to be leave. There is no modesty anymore. I lost that when my hospital room was full with 16 PT students, 5 nurses, Op nurse all got a good look at my naked body as they took pictures of every inch of me for records.

Three months on a wound vac, of having tubes hanging off my body, of being an injured octopus, and chancing out sponge and tape, of getting an allergy to tape leaving blisters on newly formed skin.

Six months of wound care, of in home nurses, bandages, tape, feeling like a science fair project gone wrong.

Sixteen months of PT, learning how to function in a world that is not made for anyone with out two working legs or any disability. Learning how to do things all over again, having to gain strength to brush my own hair, to walk, to push myself up to sit. Learning to use a walker because my balance was so bad, to relearn to move cause I was gutted like a fish. to learning to walk with a cane. To making that your new normal.

Did you know that when they remove muscles in your tummy, you never regain them? That you are then permanently dealing with the lost of your muscle? Let me tell you, it sucks ass.

It’s been two years, and still the moment I tell what I had, to everyday people, to doctors, nurses…
And they all react. Doctors stare and re read charts, and step back, ask to see the scars to poke and prod, calling in other doctors, nurses as they all and look at the havoc that is my body. Nurses mouths drop, shock, surprise.. being called the “girl who lived” like I’m some sort of Harry Potter creation and not a real human being.

Since then every year, well the two that have been thus far, for the week prior I have this sense of dread, this weight on my chest and I find myself looking over my shoulder more, internally scared more. Last night I busted into tears for an hour after realizing that at that moment two years prior, my organs were already starting to shut down, that I dying and no one even noticed I was dying.

Every day, I fight my own body to move to walk. Some days I barely have the energy to get up and walk from my bed to to my office to sit. Every day I am in pain, some less then others. Every day I fight the anger I am dealing with in side of me.

I don’t mean small amounts of anger, that fade away, I mean this deep set, hungry rage that just sits in side of me like an unwanted leech that makes me pull away more. Not at people, at my own body, that it betrayed me. That It failed to do it’s job. I get angry every time I see that damn cane that is like a permanent part of me, every time I have to take another pill, every time the pain gets so bad that I have no choice but to take another pain pill. When I look at my face, and see the half joker scar on my right side of my lip from the breathing tube I had in on and off for a week, because my lungs had failed. Every time someone comments on why I’m a problem when I dare to go out, to go shopping for basics.

I have heard so many people say “ oh you are an inspiration, and you are so strong or my favorite” you’re okay now right?

I fight the urge to scream at them who think that I am milking this, that I can’t still be using a cane it was just a little infection.

My Life, the one I knew, the one I loved.. walking to farmer’s market, going to Walmart solo, being able to do anything on my own that I wanted is gone, and that is my new normal.

I fight daily to just try to be what I used to be, to smile though the pain and the anger, to push past the need to cry and hit the thing that did this to me.

I am angry. I have the right to be pissed off and scream.

I am lucky too. To have people who love me, tell me to let the anger out..to rage and cry and that it’s okay cause I’ve got every right to be pissed off too.

I look at the ones who have been here, holding my hand, tying my shoes, helping me dress, driving me to appointments, wiping tear, healing me.. supporting me and I am overwhelmed by the love and care and support they have given me over the past two years. Care packages of beauty products, Annie’s mac and cheese, cards, flowers, a can of elder berry mead, a rose angry orchard (which are being drunk tonight.)

There are a lot of them but I’m touching on a few stand outs.

The grove: it’s not one person but several. They have arranged things so I can attend events, to be a part of things, to help as I need, but respect that I need to do things on my own. To red hand prints, first swims, mermaid moments, glitter, elderberry mead,”angel paths” and being my family of choice. ( Amy, Rebecca, Alizah, Katelyn, Kelsey, James, Issac, Lindsey, April etc) From the sparkle fairy to you: I love you guys.

To Carolyn, my best friend of 30+ years. My rock. The person who seriously has been with me though every up, down and
deep dark pit. The light that has never gone out. You have not once judged me or said you were disappointed in me. To cards, to flowers, to prayers to love that has no definition.

To my husband, E: You have been here though it all, thick & thin, good bad and right down shitty. We have faced so many things and you are still here, supporting me, holding my hand and always telling me I got this and when the anger or the tears over when, you then hold me and let me cry it out. You are amazing.

I am grateful to be alive, but I am still human. I fight anger, depression, my own body.

I am falling apart some days, I face the financial issues that come with surviving something that kills so many people. I deal with the stares and questions, but I am still here. I still look to see the good, sometimes it’s harder to see then others, but I do still try.

I think everyone has words that people use to describe them. I think, going off of what those around me have said over the past 40 years I think I have my five words that are me:

Tenacious, Brave, Beautiful, Tough, Strong. As a bonus: bad ass unicorn.

I am me, and while I am dealing with so much on my plate emotionally, I am still glad to be here.

I’m alive. After cancer, after NF, after a childhood of abuse, after challenge after challenge, I’m here; standing, fighting. just now I have a cane to swing if I have to.

If I am an inspiration, remember, you inspire me right back. That I wouldn’t have the strength to keep fighting if I didn’t have people to support me, love me and sometimes smack me and tell me to get my head out of my ass and pay attention.

Thank you.

A Question, Answered

Someone asked if I was at peace with myself.

I had to answer truthfully and I think my answer shocks people.

No. I am not at peace with myself.

I fight daily it seems to find that calmness inside of myself. I am angry, all the time, some days more then others. It’s the kind of anger I struggle to put into words. It’s not the same anger I have about my childhood in Butler, MO. It’s not the anger toward people who suspected what was happening to me and did nothing, it’s not the same intense blind rage when I think of the fact they let other children go though that hell. It’s not the same hate filled anger I have toward my step father and the abuse I grew up in. It’s not even the same anger I have against Trump and social injustices.

It’s a different, deep sort of anger I never knew was even possible.

It’s anger at my body’s unwillingness to bounce back from NF and all the affects of surviving. It’s small bits of anger when I can’t bend down and tie my own shoes anymore from the lack of muscle and the pain in trying.

It’s anger of not being able to walk the 3-5 blocks to the drugstore anymore from the pain and the exhaustion of it all.

It’s the anger at those who give me pointed stares and muttered insults over my using a battery ran cart at the Walmart, the pity some friends still have as if since I now use a cane, that I no longer am of value in general.

It’s anger at how I can’t control how much energy I will have from day to day, that some days just taking a shower is all the energy and spoons I have to work with.

It’s anger at taking meds for the rest of my life to try to rebuild an entirely broken immune system, to be afraid of someone’s cough or sneeze for fear it will give me flu.. or a cold that could put me back in to the hospital.

It’s anger that my old life is gone, and that that fact becomes more and more clear that is a battle I will not be able to win and there is nothing I can do to win.

It’s anger at my own body betrayed me.. left me for dead and now both it and my spirit have to find some way of coping with everything.

It’s anger that it’s been nearly two years and I still hate to see my scars at time, and that I wonder if I am still pretty in my weak moments.

It’s anger that I have weak moments.

It’s anger that at times, I want to give up, that I still scream and cry some nights from the pain and the sense of loss of who I had worked so hard to become before everything was yanked out from under me.

It’s anger at the fact I can’t dance with my husband, have a full glass of champagne to celebrate our marriage.

I’m angry.

Under the surface, under the bright cheerful smiles, and hope that I will conquer this and make it my bitch as I have done everything else in my life, I am angry.

Under the highlight and glitter and talk of being a bad ass unicorn, I am angry.

And under the anger… is mind numbing fear, never ending grief, of what may happen, what has happen, and the sense of lost..not of being to do things, but who I was before.

So, no I am not at peace with myself.

I do not know if I ever will be again.

Two years…

Two years ago, this was me and my husband at the Ren Fair. happy arn’t we? healthy I thought too. I’d lost over  245 pounds and was working hard to keep going.

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then I fought for my life.  I died, I came back. I  had to fight for every step, every breathe..and I spent the last 22 months, fighting for who I was before all of this.

 

Below is what I look like now. heavier for sure, less steady, physcially weaker then I had been. BUT, I also know I have a lot more to prove, and I will keep fighting every single day.

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My  motto:

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So, I’m just 6-7 weeks from hitting my two year point from surviving medical hell.

I wanted to give an update, and maybe a little bit of a reality check for my self about what I have seen, learned, regret and wish I could change.

My mental state has been up and down, as things have become more and more clear that I can never have my old life back.

What I have realized about this new normal that I have been having a hard time dealing with on a mental level.. there is something hard to face when it’s shoved in your face that this is now your new normal.

My new normal:

No dancing in the rain, no running, or shaking my booty in my office to something playing in the background. No walking though the farmer’s market to buy fresh kettle corn, or goat cheese. No wearing pretty dresses or shorts that show off my legs, because I’m ashamed by the consent raw looming scars on my legs from where my legs swell and deflate all the time. I take meds several a day, added vitamins, so that way I can keep healing from the inside out.

I have scars. A small one on my face I catch from time to time from the tubes I had down my throat so I could breathe during and after each of the three surgeries that saved my life. Several smaller ones my belly, of course the massive ones on my abdomen area that will never see the light of day for my sanity as well as the new mottled skin on my lower legs from all the swelling and wounds that reopen.

Being asked if I had knee surgery, being treated like I am invisible because of my mobility issues.

Coming to terms that I will never have my life back, that I will never be who I was.

Knowing that those who have supported me, mentally, physically are people who have permanently helped shape me now.

Learning it’s okay to expect better, and to ask for help. That asking doesn’t make me weak.

That while my body may not be strong as it was, but me, who I am inside is a freaking machine and that every time I get knocked down on my ass, I somehow get back up to face the day.

I’m alive. I breathe, I sing, I can still swim. I have a great husband who supports me every damn day with his amazing calm zen strength.

I have friends who have become home for me.

I am stronger then I look.

I will not go gently. I will keep fighting for the rest of my days.

I do not care what you think of me.

I am a face of necrotizing fasciitis. I am not a victim. I am a survivor.IMG_20180505_173147

MRSA/NF/ infection rant

Got my results from my blood work and culture on my leg, and I have another infection and I have to go to back to wound care.

I’m so angry right now, and I’m just done.

I want my freaking health back, i want my life back. 
I want to swim, and walk and dance and not be tied to a damn cane, or a scooter or a walker to get around. I want to be able to walk my happy ass to the farmer’s market and pick out my own things at a store that I can’t reach from a sitting position.

I know I am always Ms I got this and brave and strong according to people, but guess what I want to scream, and cry and be angry about the life that was ripped away from me by a stupid tiny freaking bacteria that most people get and it’s no biggie. not me, I have to freaking be special and damn it I just want my independence back.

I’m sick of pitting glances, and becoming invisible in groups, even with friends because I use a fucking cane, and I’m Just.. fucking DONE!

I’m tired of having a half a pharmacy’s medical supplies in my bedroom, I’m tired of bandages, and pain meds, and antibiotics, and face masks, wound care, and every freaking medical person needing to see ever scar and treat me not like an actual human being but just something to be poked and I’m just.. done.