Category Archives: Autoimmune Disease

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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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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This is NOT a Love Story

The first of many books I stated, let me know what you think

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This is NOT a love story! And what I mean by that is that this is some mushy gushy story about love triangles, about some guy or girl shaped my world or any of that nonsense. Though if I really think about it those aspects are in there. However, this is NOT a love story. I will not let you categorize it as such, much like Disney categorized Frozen as a sisters story when it WAS a love story. This, at least I think is more of a suspense thriller, but most people would disagree…Granted most people can’t see inside my brain. Hell I can’t even see inside my brain. Ok off track here a little bit. Anyway, now that we are clear what this isn’t, let me tell you what this is.
This is MY story; yeah get your chuckles out now. I know what most of you think of me, even some hell probably some of those who I’ve chatted up in the grocery store line. I know what you’re thinking. And no, I am not a conspiracy theorist or any of that nonsense, I just know what mask I where when and how people judge me in relation t such. Hell, I’ve burned some of those masks years ago and people still remember them. They are seared so hotly into people’s brains that I will never be who I am today but always who I used to be. So, this is a story without the mask, or at least I hope I can be brilliant honest and make it through. This is the story I should have typed a thousand times in a thousand different ways and I didn’t…
I have a lot of good excuses why I didn’t, but nothing that really gets me out of it. I have 5 fucking stories on my computer, 5! And they each have at least 2 chapters…One of them even had a PROLIGUE! And they are genuine stories that I hope to finish someday, but I can’t put my heart back in the place it was when I was writing them, does that make sense? Ok so by now you know that in person I have many masks, I make a lot of excuses and totally judge books (and movies) by their cover (and tag lines…see first paragraph). Let’s add to the stack shall we? I often go off on tangents that no one can follow (be prepared), I can be very sexual and potty mouthed, and sometimes I just out and out lie…Granted I think it’s more of a retelling of the story in a more fanciful fashion but when push comes to shove, I lie. If you have to ask why at this point I would tell you because I like to. See I told you a suspense thriller would be more my story.
So here I am baring my soul, to the world. Or at least I hope to. In this story that is not about love, though there is love in it. A story full of stories, full of unheard truths and confessions. Maybe I’m repenting for some bad shit I did in a past life, but all I got from all the oogie boogies down in New Orleans where that something really bad happened in a past life but they couldn’t tell me. I think I am writing my story because it is time, or that I am running out of time. No I am not suicidal, I am literally running out of time, I was supposed to write 50,000 words by the month of December and as of right now my word count is 607. I think if I can pound out 50,000 words in two days I would be incredible proud of myself but incredibly worn out. But I made a promise to someone in New Orleans that I would finish a book by the beginning of this year and I broke that promise. I hate breaking promises. So now it’s time to promise myself I will finally finish what I have started. For once in my life have something to look back on and say hey you…look at that, not only do you make beautiful kids, bake a mean apple pies and have a gay harem that puts the world to shame…but you wrote a fucken book. Go team you.
Now that I have gotten a minor introduction out of the way I guess we should start with my childhood right? I don’t have a lot of memories as a kid, but I have flashes of them, if that makes sense. I look through photo albums and I know faces and names and not a lot of details. Every once in a while a very clear memory will pop up in there and I will blurt it out, but those memories are so sporadic, sometimes I wish they would either stay or go away completely.
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Writing a book

What do you do when you feel like your soul has been ripped in two? You write…at least I wrote or try to. I have written a lot of little things in the past few years, I ham going to show you all of it. Because I will now hide my thoughts, feelings or actions anymore. I have to start to live. at 32 it’s hard to do that when your heart is shattered by the person that taught you how to love. That your kids call Daddy. But I will be ok when the tears dry up. or i can find a new bottle of glue and duct tape.

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The Answer You Didn’t Want

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You sat there in the chair shifting. The cushion was not comfortable but it wasn’t the worst you’d ever deal with. You waited as the papers shuffled on the desk and he turned to face you. Quietly the little boy with the big brown eyes was playing with the blocks. The noises made the silence worse. Shuffle shuffle, click click, unidentified sounds from that beautiful boy. Finally he turned, you dug your fingers into your legs to keep from shaking. You already knew the answer but you needed to hear it from someone who could tell you that you weren’t crazy. He had a PhD, he knew crazy.  Autism, Aspergers to be exact. Along with Sensory Processing Disorder and anxiety. You lips pressed together so you don’t cry. You knew what they were going to say, but hearing it was a slap in the face. But 4 years later you’re still ok.

Tap, tap, tap….fancy pen on a fancy leather shoe. Your under a microscope. He won’t tell you what’s wrong. Claims he doesn’t know. But you already heard the answer, because you’ve been living with it for years. But you needed to hear him say it. Say that you were bipolar and borderline. And he refused. So you broke his mug. And when you were finally ready to hear the answer, it was still a stinging mark across your face, because it wasn’t supposed to be right. 3 years later, you’re still alive.

Over and over this happens. It feels good and bad at the same time. Vindicated but what the fuck are you supposed to do now?

Now…When you need answers. When the bloods come back highly abnormal, you get nervous. And it’s not nervous that they will find something but more nervous that they wont. You are tired, swollen and drained. So they had scheduled another test. And you pray something pops up. Because in all your years …Nothing has. It’s hard to fight an invisible disease when you can’t find it. Sick and tired of being sick and tired. So you hope they find something. So that you won’t  have to suffer without reasons…

But you realize in this moment that this may be the one answer that you don’t want to have already answered.

Food for thought
Shaye xoxo

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What Color is your Valium?

I’m serious, it is a legitimate question to ask. You can answer for any of your really strong drugs that keep you balanced. My Valium is bright orange. It is the color you see when you go to the drug store and buy waxy earplugs or those really gross circus peanuts that people seem to enjoy.

Bright Orange. I suppose that it is supposed to maybe cheer me up. Make me feel like taking them it a-ok. Most of my pills, if you lay them out, are brightly colored. That is one of the reasons you know, that they say to keep them away from kiddos. I’m getting off the topic here, but there is a reason for that too. And that reason is exactly why I curious about the color of your Valium.

I have never really talked about my bipolar before but it is something that has come up a lot more recently. My switch seems to be getting flipped a lot more easily. I wake up this morning, I’m excited to start my day….well mostly, I have the kids ask the neighbor if they can walk with him to the bus because I haven’t changed and the color air hurts my soul. But most of all because I really don’t want to leave this house. I never want to leave the house.

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So I woke up in a good mood, woke Charming up in a silly way and the kids. I sat down on the couch with Louise and pulled a blanket over me. (This is after the kids left and I still have not been able to get Charming out of bed) I have a huge cup of hot cocoa, that doesn’t taste as good as when Charming makes it but I know he is running late, so I don’t bother him. I have an appointment for OT and PT consults starting at 1015, it’s only 845 ish.

I take morning meds, meds that have a bit to keep down my depression but do nothing for my manic (those ones are bright blue!) and watch one of my fave shows as I get dressed and I put my contacts in. The show ends I am fully dressed…except my keys. I begin to search.

I search and search and search. Everywhere they should be, under everything. I start to panic. The switch starts to flip. I am running around the house frantically looking for my keys which I can not find. I call Charming, I cry about my keys, I snap at him for taking the wrong car, I apologize, I hang up.

Out of breath, I call the doc’s office to reschedule the appointments. I send Charming an apology text and now the house begins to waver. So not only is my snowball rolling down the hill of disasterville but it’s getting harder to stand. So I curl up on Louise, nest down into a blanket and open that bottle of joy, swallowing my dosage of happiness.

 

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Louise

 

It takes a while to work but the placebo effect kicks in as it always does and I know I am going to be ok. I fell asleep and woke up indifferent. Not happy not sad but back to meh. That’s what sucks about having a mental disorder and a personality disorder. You never know who is going to win the fight when you wake up from something you perceive as bad.

When you crash emotionally and you don’t know what is going to happen. when you have trains of thought that go five billion miles per hour and in thirteen million different ways. You wake up and you are either the squirrel from”Over the Hedge” or Eeyore. You are either a drill sergeant getting everyone ready and doing your daughters hair all fancy. Or you are really wishing you were healthy enough to homeschool because then you wouldn’t have to leave the house.

You have this manic energy to clean the entire house, and after a few minutes, your body gives up on you. You collapse on the floor in tears because you just want things to be good. You want to make everything ok again. You want to feel useful but your body doesn’t want you to help. So you nest into yourself and become defensive.

Or worse, you just don’t care, about anything. you sit there and nothing’s going to make you care. You haven’t gotten validation from the people you feel you need it from. So instead of using your words, you just are emotionless. Or you are mean and push people away. Or at least, you try to. But there is always one person that won’t go away, and you have a love/hate relationship with that. it’s more that you love them and hate yourself. Because you don’t have the words to tell them what’s going on in your brain. Because you don’t know what’s going on in your brain.

So there you have it. At least, I think I summed up the bipolar thing rather well. And I even threw in a little borderline in there for ya… When it comes to having any illness that requires pills you sit there and wish for it to be over you count the days till you can stop taking pills and feel better. But, there are days that I look at those very bright pills in my hand, take a deep breath, ignore the tears welling up in my eyes and swallow all those brightly colored pills in my hand.

Because no matter how many days I count, you can’t get rid of what I have.

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