Category Archives: Chronic Illness

SURGERY SCHEDULED!!!

*cross posted*

​Insurance approval!!! Surgery SCHEDULED!!!! 

Good morning! So here’s the scoop-

18 days till surgery (yes I will be counting, it could become very annoying. Sorrynotsorry ahead of time)

7 days left to eat all the food! What I mean by that is, I have 7 days before I go on a very strict liquid only pre-op diet. After surgery, not only will I not be able to eat regularly for a while but my body won’t be able to handle certain foods. So in the next 7 days there are certain things I want to enjoy for maybe the last time. I’m not going crazy bingey, but there are some things i want. EVERYONE who can and wants to is welcome to help me on this endeavor. 
People keep asking me how I’m feeling, the answer is…I’m feeling all the emotions at once. I’m excited and scared and anxious and happy and all these things keep going through my head. I am lucky to have ya’ll in my life supporting me as I take this journey. Thank you so much ❤
(longer post to come, I’m still too giddy to type)

Therapy is not NOT an option

I didn’t go to therapy today. I know I need to but I really just didn’t want to. I surmise that this is for many reasons. Such as…My new antibiotics are making feel I’ll, I’m wicked tired, I know we’re starting to discuss emotional regulation today and my father in law passed away yesterday. All of these are very good reasons (well except one) for not going to group today but what lies under all of them is the fact that I really just didn’t want to go. Now, first of all, I believe it is helping me, more often than not I practice my debt skills to get me through the day. I try to be mindful and shuffle through all the skillfully playing cards they give me in order to cope with the outside world. I do not however like the fact that I have to keep track of what I am doing or follow each class up with himework. It makes me feel like a child and not an adult who is profiting from a group scenario. I think that is one of the reasons I get so snarky about it sometimes. Anyway, I do feel like crap from a third round of antibiotics I’ve been put on and will be going back to sleep for at least a little while.

As I sit here in my dim room with my pumpkin spice frappe (it’s amazing be jealous) I am drawn to the fact that I want so desperately to clean it, yet I can’t find the energy to do it. Granted I haven’t been high on spoons and I use most of them on my kids but there’s more to it than that. You see my room isn’t a mess per say, there are just parts of it that have clutter or need sorted out. There’s a brand new bookshelf that needs to be filled with all the wonderous books that I have. Some whose covers have never yet been opened. I think a lot of this is like my mind, a huge space so full of stuff that only the carefulness can navigate and find there way thtough. Easy to see what’s there but to delve into the hidden spots takes a keen eye and an intelligent mind. Things are hidden away. Locked treasures that you need to find the key for. One of them being my heart. But that box has multiple keys.

Speaking of which, so I was on Whisper the other day, where I received a very nice compliment. I wasn’t sure what part on my post deserved such a compliment but I appreciated it non the less. This is what I wrote.

And in very unhappy news, I am still numb after the phone call I got from the ex husband that his step dad had passed. Now I don’t generally think most people stay close to their ex’s family after a divorce but his mom, step-dad and siblings remained family to me. We exchange cards, pics, calls and whatnot. Living on two different coasts has made it hard on visits and I now feel guilty that he never got to meet my pixie. I am just taken totally aback by the situation. So I will be strong and I will push through. Gotta plan a trip sometime.

My thoughts are churning out endless streams of who knows what at the moment, so I shall  attempt to shut them down and nap. My tip of the day. Self love. Do it!

Sparkle thoughts

Xox

The Theory of Everything 

Not my title I’m afraid, Stephen Hawking’s….It’s 6:02am and I have been watching this movie for the better part of an hour or so. I turned it on because I have been waiting and wanting to see it. And in the wake of my exhaustion and insomnia it seemed perfect at the moment.

Whooping cough, everyone who is vaccinated is vaccinated against it, yet somehow this highly contagious disease has made its way into my house and my lungs as it were. The doctor said that it’s becoming more frequent to see things like this pop up, but that didn’t make me feel any better. It’s frustrating to have something that I’m protected against and that my kids are protected against, attack our immune systems because they have been given the capability to mutate do to the people nor taking vaccine seriously. No this isn’t going to be an antivaxxers rant, I’m just pissed off. I have to listen helplessly as my sprite coughs his lungs up. And I have to watch quite helplessly as the watch me not be able to function because my whole body is wracked from the meds.

Now, generally medication is supposed to make you feel better. But if you put all my autoimmune crap together and add a dose of antibiotics and steroids, I am done. My immunodeficiency made it easy for me to get sick, it also makes my immune system terrible and not want to fight back. Antibiotics are supposed to fight the bad things but the end up fighting the good ones too and steroids just lower the ability for the body to fight anything. 


Everything I am sick, I feel like I am doing something wrong. Now I know there is nothing I can do, not my fault in getting sick. I have two kids, kids get germs, I get sick easily. But when you’re doing it alone, you feel like you have to be healthy all the time. Now I know that’s impractical but it’s the way my brain works. 

I’m in pain enough already,  my fibro flares are daily, the migraines come and go, the exhaustion is constant but I push through. I soldier on because that’s who I am, I am Supermommy.But right now I’m tired, my lungs kept me up last night and I fell asleep on the couch because it was more comfortable than my own bed.

I feel awful because one kiddo is sick and the other isn’t. We’ve been told medicine and fluids and rest. One wants to play and the other to sleep, I am on the precipice of passing out all the time. The meds are rocking my body so very hard. I don’t want to and can’t let myself rely on anyone, not like I used to. It seems to me, sometimes, that I also fail at relying on myself.

I just want things to get better. I guess somedays, I still try to wish away the pain. The exhaustion. I disorders. I try to dream away all that’s gone wrong. I want to wake up feeling good again. I hope that maybe after my surgery I will be able to do that. I’m not putting all my ducks in a row, or my eggs in a basket or whatnot. I’m just hoping that maybe,one day, there will be a way to jump-start my body into producing more spoons. Into making it want to function.

This movie is drawing close to a close, it’s heart-wrenching. His story though, I know, still goes on. As does mine. Hmmm, funny that is, never thought I’d have something in common with the brilliant Stephen Hawking. But we both have stories to tell. 

My Girls in Heaven (trigger warning)

If I close my eyes and wish hard enough, dream sweetly enough I can hear your laughter. Soft and sweet giggles on the wind. I can feel your little hands close in mind as we go running through the field of wildflowers into the woods where we play hide and seek. I can see your eyes, bright blue and bright green, your hair in alternate shades of deep and light red, your skin pale as the day is long with those scatter freckles across your cheeks just like your brother and sister. I can hear your soft sweet voices singing on the wind as we tumble to the ground and make daisy crowns for our hair while we play by the water’s edge on our afternoon adventure. I feel the weight of your bodies in my lap as I hold you in my arms not wanting this day to end, this dream to be woken from. Your sweet kisses to my cheeks assure me that you will be there again when I come to visit you, that I don’t belong there to stay, that it’s time for me to go home. And when reality sets back in and I open my eyes to the world with tearstained cheeks, I know that somewhere you are still watching over me.

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I scoop up my babies and hold then tight, whispering to them how much I love them. They ask me why I have tears in my eyes and all I can tell them is that it is because I am so happy to have them with me. It is not a lie, I am happy, I am lucky that I get to hold them in my arms, that I get each and every day with them. The only part I leave out is that part of the reason for the tears is for their siblings who are always watching us and will one day be able to hug us when our souls join with theirs. One day I will tell them about their sisters who will forever be in our hearts. But for today, I will wrap them up in all over my love.

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There is for as long as I have known a stigma around writing about miscarriage, a taboo about the written word of losing a baby before they were born. But my girls were a part of me and I am not ashamed to say that. There is a part of my heart and soul that no matter what anyone says or how much time has passed that won’t stop hurting for the loss of them. They were part of me, I created them, I saw them, I knew they were there in my soul and then they weren’t. And that loss is soul crushing.

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When I found out I was pregnant in 2008 I was beyond the moon, a second baby when I was told I couldn’t have a first. I knew that this pregnancy was going to be different because I couldn’t even stand the smell of sugar, oh it was terrible. I was somewhere between 7-10 weeks along when I lost her that Father’s Day, June 21, 2008. It was confirmed by a test the next day, they took my blood and called me and I remember the phone falling out of my hands and dropping to the ground. I remember feeling crushed. I held my spritely boy that day so tightly as though the heavens would take him from me too. Later than summer I was granted a wish and therein lie the miracle and my Pixie was born 2 months after her sister should have been.

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We thought I was sick in 2015, we thought it was my lap band, we thought it was something with my stomach, I went under surgery twice not knowing. And then the results came in, I was pregnant. I was thrilled, beyond thrilled, I had a wonderful relationship and everything was going well. I was terrified and anxious and excited, I was going to do everything right this time. But everything wasn’t going as planned. The first sonogram showed her smaller than she should have been but that was ok. Then the next one, I saw her heart beating! I saw it, it was slow but it was there and I thought, look at that, this is really happening. I tossed away all the concerned looks that everyone else had because of how small she was still measuring. Then it happened the next week. She was still there, a smudge and actual smudge, I saw her…but her heart had stopped beating and she was gone, just gone. And so was I., This time, it wasn’t just let nature happen, it was medical intervention happens. We didn’t know exactly how far along I was. But June 8th, 2015 was her day, her birthday I suppose but as she had passed while still inside my body I don’t know what t call it. She was about the age as her sister had been, but the whole experience was different. This one included contractions and pain and the whole experience I had with my live births. I was devastated. My life would be forever changed.

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Why am I writing this now? Because it is June, because June for me is a hard month, one of plenty of happiness but one of a lot of pain. One that will bring about the summer and one that will forever remind me of my angel babies. May-June one day be a month of rebirth for me and not hold my heart so heavy, this is what I can wish for. So today I will go and make a flower crown with my faerie kids, we shall run and we shall play and we shall laugh. And our laughter will bring us smiles and I know somewhere our angels are smiling down on us.

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Mommy loves you

Always

Shaye

xoxo

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Bandaids

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Raw edges of a soul torn open, yet the wound will never heal if you keep touching the edges. Flashes if a past, of friendships long forgotten, of family so dear, stitched up inside you so tight. Until the day….until the day you switch gets flipped and without knowing it those wounds are torn open. Years of blame, guilt, regret. Years of. Instability, worthlessness, invalidation come pouring out.

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And it isn’t till you catch yourself staring at the label on a valium bottle that you realize your face if soaking wet and your curled under a blanket. It isn’t until your wrists at skinned raw and blood is dripping down your fingers that you think maybe you need stronger duct tape to hold your wounds shut. You watch your shattered pieces gather themselves with pieces of glitter and glue trying to rebuild itself into some semblance of what it once was.

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But a bandaid can’t fix a shattered soul, a valium coma can’t make you survive the day and blood is better inside then out.

So take a deep breath and grab yourself some glitter. You will survive. I believe in you.

Shaye
Xoxo

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Where were you? (14 years ago)

It’s almost 14 years ago, my first time. I was scared and it was dark. I had been given a tour but I still didn’t know what the hell I was doing. A virginal experience, great…and I was on my own. I could tell this was going to be unlike anything I had done before. I heard a noise in the dark…I began to run; little did I know that noise in the dark, the path I started running on would lead me to where I am today.

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That first night of my very first LARP would lead me to find out what the bond of family meant, how friendships can stand the test of time, what loving with your whole heart feels like and how home isn’t where you rest your head but where your soul feels the safest. I also learned how power can corrupt, what a real bad guy really is, how drama is never really left in high school and how believing what everyone says can not only hurt you but hurt those around you.

I sit here watching the rain almost 14 years later, marveling at how life has changed. Back then life was about having fun, raising hell, flirting, messy relationships and being too naive to realize how much people cared and how drama would follow you for years to come. It was before kids, marriage, illness. Before real responsibility and life really set in. I was so innocent minded, naive hearted and optimistic. I thought life was so hard. I was a gypsy soul with a faerie spirit. There were only two things I knew for sure…That I knew who would be around for the rest of my life and that I had fallen in love hard with someone who would change my world forever (even though I hadn’t told him).

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Now those people who I called family only see each other at funerals and promise to see each other more often. We’ve drifted apart and we try to stick together when we can but we know IF we are NEEDED we show up en mass. There are people that have drifted away to find their own new adventures. There has been marriage and divorce, lots of little ones along the way. Drama has dwindled although give us too many bottles of wine and we will bring it up and laugh about it now.

I listen to my sprites chatter away as they are falling asleep and I smile because so much of my life has changed. I have planted roots in a place I never thought I would. I have lived in more places than I ever thought I would and I am in school to help others in ways I should have been helped as a teenager. I spend my days running to appointments for the countless things that are broken with my body and my nights editing for independent authors, writing in at least one of my novels and doing schoolwork.

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I have bills and I can drive a car. I know what real life and responsibility are. I know why I can’t just move with a change in the winds. Life has taken me on a hard path and I have stumbled and fallen so many times I can’t even tell you how many scars I have but I keep moving forward. My mind isn’t innocent anymore but my heart is still pure and loving and I can still be way too optimistic for maybe anybody’s good. I’ve been told I should be jaded but I can’t be. I’ve been told I am a lot stronger than I was but I don’t see it. I guess I am glad other people can see it in me. Life is still sometimes flirty and full of raising hell (and by hell I mean the sprites of course). Messy relationships are still happening every so often but by now I know when to walk away.

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I still have that person who I knew would remain in my life forever. I have found ou that if you’re good friends with someone for over 7 years you will be friends with them forever. Thinking about my closest friends, I met the ones that are there and have been there through all the ups and downs of life through nights int he woods. We still share the laughter and tears, the inside jokes, the secrets and the boozy nights of going “why did we think our shit was that hard?!?!???”. That guy that I felt hard in love with, I still am and I don’t know how not to be, he knows now though. Although he is not in my life in the capacity I wish he was, he is in my life and I know he always will be, that is the stuff that matters.

Life changes around you all the time, 14 years ago I found the place I needed to start finding the path to my destiny. To the woman, I was to become. Be it in Avalon or Ravenna, I always knew that I had family, laughter and a place to escape for a while when life got to be too much. For that I am thankful

Sparkles

Shaye

xoxo

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I’m here for you. For as long as you need me.

I was going to go into detail, tell you of my story but right now I can’t. I can’t because you don’t need to hear my story right now, you need to hear that I will understand yours. If I can’t understand you, I will listen and empathize. I will give you my hand, lend you my shoulder and certainly be a sounding board. I chose these pictures for you because in them I saw my past, I saw my friends, I saw my struggles and I saw the messages I needed so long ago. The reason I became who I am today, I wanted to be the person that I never found so long ago. So these are for you and me.

I am here for you. For as long as you need me.

Sparkles,

Shaye

Xoxo

 

Decompression

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People wonder what I do all day, a woman on disability, a single Mom on welfare, a transplant who after 5 years can count her closest friends in the area on one hand.

People don’t understand why work is so hard for me. Why I can’t keep repetitive motion in my arms, why I can’t be on my feet for more than 15 minutes. They want to blame my weight.

My weight which I have no control over, but I’m working on. My fibro which I have no control over, but I’m working on. My getting sick all the time, which I have no control over, but I’m working on.

So what do I do all day?
I get up
Get the kids off to school
Go to therapy, physical therapy, occupational therapy, aquatic therapy
Followed by more therapy
Then make some calls and/or do some homework
Then maybe shopping or an appointment
Get the kids (or just one kid on m or w)
Do homework
Pick up other kid
Possibly some errands
Homework
BSC comes over/prepare dinner
Wind kids down
Say good night’s
Explain why they can’t sleep in my bed
Say good night’s
Start my own hw or cleaning
Send kids back to bed
Go back to doing my stuff
Explain why kids can’t sleep in my bed
Finally finish my tasks
Take meds
Lay down and hope to sleep
Lather Rinse Repeat
Add in chaos, stress, bills and pressure and that’s my daily routine.

Sometimes I decompress, I deserve to decompress. Even if that means laying on my best friends couch, watching kitchen nightmares while she paints her face.

Everyone deserves a few hours of me time

Shaye
Xoxo

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On the road – SoundCloud

Listen to On the road by Shaina Abbs #np on #SoundCloud

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I Miss

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I miss the good morning beautiful
I miss the sound of your voice waking up
I miss the good morning kisses
I miss the five more minutes snuggled in your arms

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I miss snuggling on the couch
I miss your fall asleep movies
I miss the way you would watch what I wanted
I miss your random texts
I miss the I love you’s
I miss the way you yelled at football
I miss the way you cook

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I miss the way you were so gentle when I needed it
I miss the way the even when you were inside me we were never close enough
I miss the taste of your skin
I miss the warmth of your body

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I miss the way my kids became yours
I miss the flowers
I miss the kisses
I miss the I love yous
I miss the way you snore
I miss the way joked
I miss the way that you made me your world

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I miss the way you asked me to marry you
I miss the way you called me yours
I miss the little girl we made
I miss the ones we were still to make
I just miss you…

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