Halloween Magic

What happened to that mom?

That mom who decorated every holiday no matter how big or small it was?

This year she is gone.

Hiding some place refusing to come out.

I don't have the energy this year.

I so wish I did.

I want to get past this chronic fatigue and chronic pain,

hoping that decorating will make me feel better.

Is it even possible to feel better?

Is it even possible to push past this?

I have no clue.

I wish I could bring back that mom who got overzealous about all the holidays.

That mom that no matter what decorated.

That mom who always baked for every occasion.

That mom who was just so desperate for something normal that she made it happen.

What's changed?

Yes I have fibermyalgia,

but I know I've had it for some time.

It only got worse coming up on a year ago.

I want to dig through the decoration.

I want to scale the counters to hang things from the ceiling.

I want to stand on my tippie toes on the top of the step stool to hand fake spider webs.

I want to hang black gossimer in the windows,

black paper owls on the door,

glowing eyes in random places.

I want to stand back at the edge of the yard and admire my work,

knowing that all the kids in the neighborhood will point and laugh,

and be excited about Halloween.

Halloween is my favorite holiday.

You get to dress up and become anyone you want.

You get to scare and be scared just for laughs.

And most of all,

my husband proposed to me on Halloween.

At 2am.

When he didn't even know I LOVED Halloween.

It was meant to be right?!

And even though things have been difficult since Liam was born sick,

I still love him with all my heart.

Even when at times I feel it would be easier to leave him,

I still love him.

Love isn't easy.

Your supposed to work for it,

make it work.

Because otherwise it isn't true love.

So maybe that's why I am so saddened by the fact that I haven't decorated.

In my own way,

it's me celebrating the day he realized he loved me ad couldn't loose me.

Halloween is magical.

It's when everything we don't believe or shouldn't believe in comes alive.

It's the only time of the year where the taboo is not taboo.

Princesses find their princes.

Or happiness in HUGE bags of candy.

Ghost and witches fly around from door to door saying the magical words that get them candy,

trick or treat.

Everyone can be who they want to be.

For once they can have hope and see the "magic" of this world.

It's great fun seeing all the costumes.

Watching the kids fill their bags with candy then later gorge on it.

Fun Halloween games,

bobbing for apples,

haunted hay rides,

haunted forest.

Hogwarts come to life,

whole blocks turned into pirate ships.

Halloween is about discovering the magic.

I want to rekindle old memories.

I want to show my kids that there is magic out there.

I want to see their faces light up as the house transforms from just an ordinary home,

to something greater.

So can I get my body to cooperate?

Can I work past this?

I honestly don't know.

What I do know is that I want too.

Instead of sitting here feeling sorry for myself,

I'm going to get up and at least try.

I shouldn't give up before at least trying.

My kids need to know that even if you fail,

it's ok because at least you tried.

You don't give up before the game even starts.

Two Things Every Girl Needs

          I'm pretty sure all a girl really needs to have confidence or to overcome the worst days is a good mascara and lip balm. You'd be surprised how much confidence you have when you done some mascara and apply that lip balm. 

          What gets me through the worst of days may seem trivial to you, but it worked for me. When I feel unsure and shaken or am just having a horrible pain feel day (thanks Fibermyalgia) I done a little mascara and lip balm and feel much better about myself. Whether my hair is thrown up in a messy bun or flowing free, dressed in sweatpants, as long as I have my mascara I'm good.

          These two little things have gotten me through the last 3 years of hospital stays and surgeries for my son Liam. I can't go anywhere without my EOS lip balm and Younique 3D Fiber lashes. 

The 3D fiber lashes are amazing. I have long lashes but these make my lashes even longer and so beautiful. With these I can conquer the world.

You can read my review here or you can purchase them here

          I've had a bad week with my fibermyalgia acting up. It's was so bad I didn't have the energy to put on my mascara. Today I forced myself to done my mascara and lip balm and I feel better for it. It hasn't done anything for my pain of course, but for my confidence, it's made a world of a difference.

Incredibly Undeniably Painful

I just got done scraping my theigh on my desk. Sure it should sting a little then the pain would go away and I'll have a little scratch. That simple. 

Nope. Instead when I ran into my desk accidentally and scraped my theigh accidentally I was doubled over in pain. 

Pain radiated through my body to the point I thought I'd vomit everywhere. Pain to the extent of making me both dizzy and immobile. I couldn't move, literally from the pain of a simple little scrape. 

It took almost five minutes before I could regain my composure and my strength to move. It was shocking and confusing. 

Tweenty minutes after I regained my composure, I'm still in pain. Now it's only radiating from my right hip down to my calf. It also feels like someone hand is laying on my theigh right where I scrapped up my leg. 

Earlier today when I went outside to watch the kids to play the dog accidentally hit my leg with his head. I was in pain for hours. 

I know I'm new to this game called fibermyalgia but really should it be this bad? It baffles me really. Healthy one day and suddenly out of nowhere, BAM 💥 You spend the mojority of your days riddled with pain. 

Even more baffling is how a heating pad helps ease the pain yet on a hot day (like today) my body feels like pins and needles are sticking me all over my body. Why does one heat help and the other makes it worse. Baffling. 

A Royal Flush

The girl/woman in this picture seems so happy. She seems so carefree. Sure there's circles under her eyes from lack of sleep but she's happy. She's got it all figured out and her life is getting better after years of hell. 

Little did she know within a few short weeks of this pic being taken that her life would get worse again. That her health would decline and people would start thinking she was a hypochondriac and a liar. 

The happy girl is/was me. Happy days aren't as often. I don't know if the worst part is the chronic pain or he fact that no one believes me. Even with a medical diagnosis no one believes. 

"It's all in your head"

"Your making it up"

"Are you addicted to pain meds?"

No it's not all in my head but more like all in the nerves. The nerves in my body are over active causing my brain to register it as pain. 

I'm not making it up, although I wish I was because then I could shut it off. It's hurtful to be riddled in pain and have someone not believe you. It's the reason I've been in pain for years without doing anything about it. The support system I need just isn't there. Which is all fine and dandy because when I am in pain I'd rather be left alone. 

When I go into urgent care, emergency room or to see a new doctor I feel like they think I'm just seeking meds. In reality I'd rather not have to take them. They're harsh on the body and make me sick to my stomach. I hate how they make me feel foggy. My last doctor was great and listened to me. I explained to him any meds I had to be on could not interfere with me being able to wake up through out the night and couldn't make me so drowsy I'd pass out. 

At first I said no pain meds. I stuck with over the counter ibproffen. When that didn't help we did prescription strength ibproffen. After we tried Vicodin. Finally we settled on tramadol because it's non narcotic. He wrote the script for twice daily (every 12hrs) but 90% of the time I only take it at night. 

I'm sharing this because well I need to get it out somewhere. I HATE meds. I HATE taking them. Unfortunately they are just another aspect of fibermyalgia. 

There's nothing I can do to make people believe. I don't have the strength it would take to even attempt to make them see and what's the point anyway? I know what's wrong with me. The doctors know. Does it really matter if anyone else does? The way I see it I can either use the energy to unsuccessfully make other see or I can use the energy to get out of bed and attempt to enjoy my children even when in pain. I think the ladder option is my choice. 

For now I'll do what I've always done. Suffer in silence and blog about it. Someone out there will one day read this, someone whose going through the same thing, and will reach out to me. That's how support systems are built, by putting yourself out there to be heard (or read as it may be). 

Until the pain ends for good I will sit here and pray for God to deal me a better hand in this poker game of life. 

In a game of cards a royal flush is what you want to win. But in life it's the complete opposite. 

Finding Support

          In the midst of a fibermyalgia flare up I feel lost, not in control of my body. The pain is so intense all I can feel and think about is the pain. Nothing feels good. The slightest feather light touch causes pain. Forget about covering up with a blanket. There is no comfort zone. No way to relieve the pain.

          Today is day 5 of this flare up. I though I was only on day 4 but lost a day of my memory. That's another problem with fibromyalgia. Your brain feels like it's in a fog. You loose your memory. At times I can't remember where I set my phone or keys when only seconds earlier they were in my hand. I lock the door and by the time I get to my car I can't remember if I locked the door or not.

          I have constant headaches. They never go away just change in intensity. At this point in my typing up this post I am hurting so bad I want to give up. Just erase it and forget about it. Nothing I do during a flare up is pain free.

          Today has made me realize that I need a support group. My husband understands that I hurt. It scares him. But he doesn't understand the intensity of the pain. He doesn't understand what I feel. He doesn't understand that when he comes into the bedroom and lays across my legs in an attempt for physical contact that it's not comforting me. It's causing pain. This morning he did so and I ended up in tears crying for half an hour until the tramadol could kick in to skim just the top layer of pain away and stop the tears.

          I need to connect with people who understand what this feels like. People that can virtually pat the on the back and say it'll pass. That things will get better. Flare ups don't stay.

          Most of all, I needed to share my story. Blog about how I'm feeling. All in hopes of remembering in case I forgot and the doctors needed to know. But more importantly I needed to spread awareness and reach out to my readers in hopes to connect with others going through this same thing. It's a lonely journey. I've had symptoms for years but was just diagnosed a few months ago.

          Back in December I had a huge flare up. I could hardly walk. The doctor I was seeing at the time came to the conclusion (with my help) that what I had was Aspertame poisoning. Then in April/May when I had another flare up, I saw a new doctor. Went through physical therapy. x-ray's, and blood work and at the end he decided to diagnose me with fibermyalgia. That was after he tried me on Gabbapentin. Gabbapentin caused my already over talkative nerves to talk even more creating even more pain. Like electricity. I stopped the Gabbapentin and the pain went back to what it was before. Still very painful, but not so many electric shocks.

          Right now I'm on Ampetripiline, tramadol and flexeril. I personally don't like meds. I won't take them unless I absolutely have too. I take the tramadol at bedtime and only in the mornings if I have too. I hate having a condition that forces me to take heavy duty pain meds. But what I hate even worse is being in so much pain I can't be there for my kids. I can't play and laugh with them because it causes even more pain.

          I feel lost and alone in this. All I can do is keep faith that it will soon pass. That flare ups will start being far and few apart.

When the pain gets too much

Everything hurts. Every feather light brush  causes pain shooting through my body. 

My feet to my knees feels like pens and needles. My hands to my elbows the same. The too of my feet feel like a rug burn. 

My hips are sore with shooting pains. I can't lay on my side. 

My spin feels like it's on fire. My neck and shoulders are tender. My elbows throb. 

Migrain. 

Shooting pain in the middle of my back. 

A light blanket across my body causes everything to hurt. 

I lay here crying because of pain. Because there's nothing I can do about it. This is my life. My life with fibermyalgia. 

I'm missing out on so much with my family. The kids are in the living room laughing and enjoying life as I sit here crying. 

The only time I'm getting with them lately is when they come into my bedroom and sit on the bed with me. It's not fair to them. They should never see me like this. Ever. How am I supposed to take care of them like this? I still do Liam's medical care. I force myself out of bed to do his feeds, breathing treatments and meds. 

I force myself to make sure they've eaten, have clean clothes and everything they need. Sure I could stay here in bed and just let justin do it all but that would make it worse emotionally for me. 

Today, right now I can't move. My body and mind are exhausted. Keeping my eyes open and awake is difficult. 

I just want to be better. No more pain. All I can do to get through it is tell myself the pain won't stay. It'll pass and things will get better.