Epiploic Appendagitis

I hate to admit when I need help. What I hate to admit more is when I'm not OK.  I'm not OK. I try really really hard to be but it's an uphill battle. For so long I let my health go. My hands were full taking care of Liam. My kids will always come first, ALWAYS. Maybe that was just an excuse I used to not confront my own health. I seemed to run away from it every time something popped up. Well there's no more running.

The pain I'm in is too intense to ignore. It sent me to the ER twice last month. ER diagnosed my with a rare condition called epiploic appendagitis. 

An Epiploic Appendage are these tiny fatty pockets along your colon. They serve no purpose whatsoever. Epiploic Appendagitis is when one or more of these swells, or gets twisted up and starts dying off. It's extremely painful and rare. Mine is extremely swollen to about the size of my pointer finger. The entire area around it is swollen as well, to the point you can see a lump on my abdomen. The ER doctor said these usually resolve themselves. Mine however is not resolving itself.

Because this isn't resolving itself my doctor referred me to a surgeon. I just saw the surgeon this past Monday. After asking me a ton of questions, he feels like the epiploic appendagitis was caused by Endometriosis. He feels like when I suffered the uterine rupture with Liam that it increased my chances of having endometriosis exponentially and that I have all the classic symptoms.

In fact my PCP also believes I have Endometriosis and when he referred me to the surgeon he was supposed to list laproscopic surgery but when the referral lady filled out the form she failed to add it. I've discussed with my doctor what we're going to do and since I can't have anymore kids we decided it's best to look into a hysterectomy. Now I need to find an OBGYN to follow through.

The surgeon also wants to do a colonoscopy because he thinks I have either Crohn's or Ulcerative Colitis based on some other symptoms I've been having. He feels that it's more important to address the endometriosis first because of what it's affecting.

What I'm positive of is that my pain is getting worse as the weeks and days pass and that I can't handle it anymore. I'm currently taking Norco and 1,000 mg Naproxin twice a day as well as using essential oils and a heating pad. Some days it does nothing for my pain.

I know that my family needs me but I can't do for them what I normally would because of this pain. I'm not myself. I feel like a failure because I'm not even half my best. I'm not OK. I just want to do whatever I have to to get rid of this pain so I can go back to being the mom and wife they need me to be. I want to be able to get through a day without being in so much pain that I wish I'd just die already because dying would be less painful.

I'm praying that this horrible pain journey will be over, or better soon. 

How Fibro Changed Me

As I'm sitting here having a bad pain day and therefor a bad emotional day, I'm thinking about all the ways fibromyalgia has changed me. 

-I've lightened my load in my purse. I've even put away my favorite purse and use a much smaller one that barely fits my wallet, keys and phone. I just sang carry anymore than that because it's too painful. 

-I wear my clothes looser. All the clothes I've been buying are way looser. Some 2-3 sizes too big. Tight clothing feels restricting and causes a lot of pain.

-because of the pins and needles feeling and being hypersensitive I wear a lot of long sleeves, even when it's hot outside. 

- being touched causes pain. Even hugging. I still hug and cuddle my kids and push past my limits for them but it causes pain so intense I'm left crying and needing to be left alone. Because of this I hate being touched. I hate handshakes and someone in my personal space. The good thing about having a friend who understands this is that I know it's safe to be around her because she will never try to go in for a hug like some others. And she will never get her feelings hurt by the fact that we just don't hug. 

- my house isn't as clean as it used to be. I just can't keep up. Movement causes pain and pain causes exhaustion. I get very little done before I have to sit down or lay down. It sucks. 

- I have to take naps and frequent breaks to make it through the day. The problem with chronic fatigue is your always exhausted no matter how much you sleep. 

- you know how they have so many cute shoes that you would kill to wear? Heals, boots, name it? Well wearing them kills me. Heals are a huge NO NO! Walking is painful and any shoe that's not a flip flop makes it worse. 99% of the time I'm wearing flip flops. It takes to much energy to bend over and put on shoes that have to be tied or zipped so I wear what I can slip my feet into without having to bend over. Now that cool weather has hit and flip flops aren't feesable I don't have a choice but to wear enclosed shoes. Slip on boots with no laces and minimal effort are what I'm stuck with. On a decent day I may wear something else but chances are slim. 

-I don't have the energy to wear makeup or do my hair. I'm lucky to get into the shower and wash my hair. Makeup free with the sleep deprived bags under my eyes in plain sight and hair down or ponytail. 

- lifting my arms above my shoulders is almost impossible now so anything more Han a quick ponytail is a no no, not gonna happen. This includes reaching for things and lifting. 

-heavy lifting.. Hahaha yea right! I have problems picking up and carrying my 25 lbs son!! He walks and then I put him in a cart when we go somewhere. By the time I pick him up and place him in the cart I'm out of breathe and ready to go home. 

- I try to stay clear of social situations. I just can't function in them. Between the noises and being surrounded by people I just cant hack it. 

- I don't exercise anymore, ever. Unless I want to be stuck in bed for 2 weeks!

- I use to love to read. I read every night before bed. I can't even keep my eyes awake to do so anymore. Reading out loud to my kids is difficult because I have problems with slurring words and it's exhausting. 

- I don't like to talk on the phone or talk period. I'm that quiet person who hides in the corner when I take my kids to birthday parties. I don't talk on the phone a lot and when I do its only for a select few special people like my aunt and grams. 

- by the time I'm done cooking meals I don't have the energy to eat them. I have to rest before I can eat. This is most dinners. Other meals I microwave or skip (for myself anyway). 

- I'm constantly in pain so I'm grumpy most the time. It sucks honestly. 

- hobbies. Well I don't have the energy to do hardly any. Once in a blue moon but it's usually something with my kids.m, like my previous post. It's not fair that they should have to suffer as well. My online store is basically none exsistant because of this. 

- working is impossible. I can't stand for long periods of time. I can't be surrounded by all those people and I can't think because I'm always sleep deprived. 

These are only a few ways my life has changed these last few years. People tend to not understand when you tell them you have fibromyalgia. They just don't understand how it really changes you. I'll never be the same person I was before. 

Believe In Life

"Believe in Life! Always human beings will progress greater, broader, and fuller life" 

-W.E.B. Du Bois

I haven't had much faith in life lately. I also haven't wanted to talk about it. But I think it's time I let it out because I'm prone to bottle things up until one day they explode like a shaken soda. 

You see, I am a ticking time bomb of sorts. I always have been. I just hold on to all my anger and pain until there's no room left and I can't control the explosion. 

I don't want that. I don't need that. But if I don't act soon it might be the likely ending.

I'm miserable and having a hard time seeing good and happiness.

I'm in pain constantly and that pain is getting worse with each passing day. I'm not able to find any relief. 

Before I could find relief with a heating pad or IBproffen. If the pain was really bad, I'd dip into my tramadol. 

Sadly none of that is helping. Not even the tramadol. 

I'm having a hard time walking. My muscles are twitching and spasming so bad that my body is constantly moving. 

I won't go into anymore detail.

Emotionally I am a wreck.

I'm angry at the world.

Angry I can't find my happiness.

I don't have the energy to actually speak to anyone.

My husband isn't helping the situation any, but that isn't new.

He wants me to talk to him and I just don't have the energy to let it out. 

I don't have the energy to make everyone happy.

I haven't been cooking for anyone. Justin's been doing that. But it does me no good because I don't have the energy to eat.

I finally ate at 3ish today. Just a few bites and it made me sick to my stomach.

The pain won't let me keep much food down.

I'm mad at the world because I'm mad that this is my life.

Pain filled misery.

Why me?

What did I do to deserve this?

I diligently take care of my son with his medical problems.

I hardly ever complain despite the fact that I probably deserve too.

But I don't because it's a waste of energy that I don't have.

I saw the above quote and thought maybe this is what I need.

So I take as deep of breaths as my lungs will allow (which is shallow breathes that are painful if I inhale too deeply).

With each breath I remind myself that life is good.

The sun shines.

The rain falls.

My kids smile and laugh.

God loves me.

It's like a mantra I keep saying over and over in my head. 

Maybe I'll start to believe that I should believe in Life again. 

One day. 

Maybe. 

I Won Today

It's been hectic here. Seems like it always is. I've been busy helping PTA with a school carnival, taking care of Liam and Lanie and dealing with my own pain. 

The kids are in bed so I can finally lay here and succumb to the pain. My kidneys have been hurting bad since last night. Earlier today abdominal pain stated and is only gotten worse. I also have a migrain and stabbing shoulder pain. 

I go through the day and force myself to work through it for the sale of my kids. They don't deserve a mom who is miserable and unable to be there for them. 

I played games with Liam.

Took care of all his medical needs. 

We had a gtube emergency when he pulled out his tube accidentally and I had to rush across town to my niece so she could help hold him down so I could get the tube back in. 

Went to the grocery store (twice). 

Picked Lanie up from school. 

Cooked dinner. 

Helped Lanie with homework. 

Worked on physical therapy with Liam. 

Played outside with the kids. 

Showered them and got them off to bed. (With Liam being on an all night feed it's no easy task)

I did all this and more without complaining or letting on that I was miserable. I feel like I won today. Despite the pain, I won. I fought through it, got things accomplished. Fibromyalgia had no chance in hell today! 

But now the kids are asleep and I am miserable. I'm allowed to Waller in that pain now because I survived today. Now if I can just get the pain level down a bit so I can rest and get through tomorrow's hecticly busy day. 

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.

It's an update

It seems like we are in the midst of being tested yet again.

Last night was the first time in two weeks that Liam had tolerated night feeds at full rate. We're finally back to his old rate of 85 mls per hour and in a few days will have to try yet again to slowly increase the feed until we get to 95mls per hour. 

This morning he woke up with a runny nose. He's also been coughing a lot requiring extra breathing treatments. But those extra treatments are what's allowing him to tolerate feeds. 

I'm suffering from migraines. For the first time in awhile my fibermyalgia seemed to be under control. Pain was minimum. Then out of nowhere the migraines started. They've been lasting up to 3 days long. Give me 1-2 days migraine free before another one strikes. As of 1:20am I've been miserably in pain. I can't function. The migraine was so bad it woke me up from a dead sleep. I was in tears. All I could do to find the slightest bit of comfort was to sit up, leaned over a pillow and rocking back and forth. Meds haven't help. Not even migraine meds. The pain has been so intense I couldn't eat. I've felt sick to my stomach and miserable all day. Wearing sunglasses inside and hanging out in the dark. Late afternoon I fell asleep for 3 blissful hours but didn't wake up much better. I was able to get son food in me as soon as I woke up but then it was back to bed. 

This is my busy week. I have far too much to do than be stuck in bed. I know God won't give me more than I can handle and I'm thankful that Justin has been home to help with the kids today so that I could attempt to get rid of this migraine. I'm also thankful that Liam is finally tollerating night feeds. 

Trying to stay positive about everything. Focusing on what I can be thankful for about the situation instead of how miserable I am and who I can blame. There's no use in blaming. Things happen that's put of our control. 

I wish I could give a better update but this is all I have in me. I can't think straight at the moment but I have faith things will get better. I pray that they will. 

Doubled up on Liam's breathing treatments. 

Was able to braid lanies hair for her this morning. 

And 3 years ago today we began our feeding tube journey. 

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. 

Unexpected Eventful Day

Today has been unexpectedly event here for us. Lost of blessed little moments that I am so happy I got pictures of because in years to come they will be treasured by the kids. 

Lanie and I started today off with a breakfast "date". I woke Lanie up a few minutes early today so she'd have plenty of time to get dressed then I took her to have breakfast at school. She was thrilled.

She opened up her milk all by herself, which she was so proud of doing. 

Then she opened up the little package containing a napkin, spork and straw, all by herself. 

Lastly she opened up her cinnamon waffle, all by herself. I asked if she needed help but each time told me "no mom, it's ok I got it". 

As she ate she people watched. Something I've always done as well. She talked about all the solar systems that the older kids were carrying around. She thought each and every one was made perfectly and commented that she bet it took them a long time and hard work to make. She also said she couldn't wait to make one of her own in 1st grade. I explained that it would probably be a few years before she had to make one for school seeing as how the children carrying solar systems had to be in 3rd or 4th grade. At this she just shrugged her shoulders and kept admiring them as each one passed. 

After eating her fill she placed her untouched fruit and apple juice in her backpack to save for snack at recess then we made our way to the kindergarten playground. On the way we met up with one of her friends, Lane and his mom. The two played while us moms talked and watched. 

After getting home from dropping Lanie off at school I decided to make breakfast since Liam, Justin and I hadn't eaten and were hungry. After breakfast Liam needed a shower. He was covered in jelly. After a shower it was time for bright start. 

Miss Julia had a couple new activities for Liam. First Liam practiced lacing beads onto a shoe string. He's getting better at that. We did notice that his little arms were shaking as he did this activity. Maybe he's just tired today, we aren't sure, but coupled with the decrease in talking this morning points towards tiredness. 

For his second activity She broke out a peice of paper and scissors. Yes scissors. She apologized in advanced for showing him how to work scissors but it was a skill she had to access. 

He was able to cut using two hands but not one handed. In the above picture Julia is showing him how to hold the scissors and how they work. 

This smile says it all. Not only did he think cutting paper was the coolest thing but he was so very proud of himself. Despite the fact I'm worried he might now seek out scissors and start cutting things, I am very proud f him as well. 

Lastly she laid one card at a time down and asked Liam what each child was doing. Liam would tell her 

"Running"

Or "sleeping" depending on the picture. 

On one card of what looked like a child writing Liam said "cutting". Julia goes "huh? He's not..." Then she noticed a pair of scissors laying on the table by the child. So of course he was praised for noticing just a little detail. 

During bright start fed ex delivered a package for Liam but it was time to pick up Lanie right after Julia left. So after  Lanie got home from school Liam was able to open up his package. 

The package was from the Kira Foundation. thekirafoundation.org (they have a Facebook page as well). The Kita Foundation provides "Bucket of Love" to children fighting cancer. Liam does not have cancer but there was a misunderstanding and Liam's name was put on the list to receive a bucket of love from these amazing people. After contacting them through email they said that they did know Liam did not have cancer but that the bucket was made just for him and the very amazing woman I talked to thanked me for spreading CDH awareness and that before Liam she hadn't known of it. 

We want to send a very big thank you to the Kira Foundations. Liam absolutely loves his bucket of love. 

Lanie was teaching Liam how to so puzzles on his new Mickey Mouse puzzle. 

I love this because they worked together to finish this. 

Later on the kids uncle showed up unexpectantly. The kids love their uncle. 

Uncle and Liam play fought. 

And uncle let Liam win. 

The kids had a blast and we had a very blessedly blissful day. 

(Besides my back pain)

Again we want to thank the Kira foundation and we hope you go like their Facebook page and visit their website. 

Oh and this momma had a job interview on Monday 😊❤️😊❤️😊❤️😊❤️

Choose Your Battles

Having children has taught me to pick my battles. Especially with Liam. Do I fight him when he only wants to eat Doritos or do I rejoice in the fact that Atleast he's eating something? It's not worth the fight to say "no you can't eat that" because it defeats the purpose of getting him to eat. 

Do I let Lanie wear mix matched socks or fight with her to find a matching pair? Fighting with her only causes emotional distress for both of us and who cares if her socks don't match when you can't see them anyway. 

#makeitcount #chooseyourbattles #cdh #cdhawareness #chroniclungdisease #asthma #gtube #tubie #spoonie #gastroparesis #malrotatedstomach #biotinidasedefficeincy #chronicpain #makingthebestoflife