Big Moves

We did it. We finally moved to our new house. It's been a week of moving everything over and cleaning out the old house, followed by four weeks of trying to settle into the new place. It feels so strange. Like there are two realities and I'm stuck between them, unsure which one is real. It feels like we're meant to be here yet like we don't deserve this.

It's a bigger, better house, on a better side of town with better schools for our daughter. We're waiting for the shoe to drop and for this to be taken from us like everything else that makes us happy. I guess that's how you feel after you've gone through what we have and suffered like we have.

This move was a hard one. We had to do it without our little boy. When a family moves, the whole families goes. They don't leave behind anyone. But the only part of Liam that got to move were his things and his urn. To pack up his corner took a lot of strength. To pick up his urn and transport it to the new house sent me right back to when we picked it up from the funeral home. I started spiraling emotionally. We also had to go through boxes that were in storage and found more of his things that were put away before he passed away. At one point I started crying and had to walk away. There's only so much pain one heart can handle. We shouldn't have to go through our dead child's things to decide what stays and what goes. Then again we shouldn't even have a dead child. I say it that way because I want you to really feel the pain. Or maybe it's just me. Saying he passed away is like trying to soften the blow for people when the word dead is like a slap to the face. It can't be ignored.

I knew moving without Liam would be extremely hard. I just didn't expect it to be so soul breaking. I didn't anticipate having to go through his things or finding stuff stashed away. His shelf was to be set up but his boxed belongings were to be stored in the office closet, as is. That's not at all how it worked out. We've been here three weeks and have so much more unpacking to do.

I know that we have to live but living after the loss is so hard. He should be here enjoying the room to run and exploring. We know that we have to find our way. This move is supposed to help us. I can honestly say that despite the few breakdowns we've all had over Liam, that there's change happening in all of us.

We're still not completely unpacked. Not even halfway. We unpacked enough to "survive" then the unpacking just stopped. For the first time since we first got married, it looks like we're living a minimalistic lifestyle and I gotta say it's actually working for us. Our lives feel less cluttered, physically and emotionally. It's almost like having less stuff is helping us process our own thoughts and feelings.

Our house is staying cleaner. Things aren't just littering every surface or the floor. I'm not constantly having to pick up after everyone. I have more time to focus on the things that make me happy. Only I have no idea what that is anymore and instead of concentrating on whatever that may be, I'm having to concentrate on my health because it's seems to only be getting worse.

Yes I still have Fibromyalgia. Yes it's still a pain in the, everywhere. I know my limits with it, and admittedly I always over do it. About a month ago I was diagnosed with something new. Itersistal Cystitis. A very painful problem with my bladder that has just seemed to get worse this last few months. You know how they say 'when life gives you lemons, make lemon aide?'. Well with IC you don't want to consume anything with lemons in it. It's a good thing Lanie went off to camp this last week so she didn't have to see me absolutely miserable and in bed all week. I spent this week in so much pain and trying new medications and peeing blood. I know TMI but this really is serious and if there's something I do consistently, it's spread awareness.

Speaking of Lanie, shes having an absolute blast at christian camp. She called Tuesday and said she loved it. Sunday she's getting baptized. She's starting her own journey with God and we couldn't be prouder of her.

Positive or Negative

 

 

I used to think of myself as a positive person.

In fact I know I was the most positive person I or anyone I know have ever met.

I was perpetually positive.

Life has a way of weighing down on you.

Of changing you.

I've lived a hard life.

My childhood wasn't the best.

I suffer from chronic constant migraines for years now.

I am in constant pain from Fibromyalgia,

degenerative disk disease,

and arthritis in my back.

I have depression,

PTSD,

and anxiety.

My son was born with Congenital Diaphragmatic Hernia,

and was chronically ill his entire life.

Still I stayed positive.

Granted not as positive as I was before that,

but still positive.

 

In December when my son passed,

it felt like the world was crashing down on me.

Any positivity I had flew out the window.

For months I haven't hardly been able to function,

let alone feel positive about anything.

 

Today I feel different.

I feel sad.

I feel empty.

Just like every other day.

But today,

for the first time,

I felt some hope.

Some positivity again.

Not about my grief over loosing my son.

But for my health.

 

After weeks of trying to get into the lab for doctor ordered test,

yesterday I finally got in.

I parked in that underground parking garage,

despite my unreasonable fear and anxiety.

I stayed in that crowded waiting room meant for 6,

yet filled with 20,

despite the anxiety building.

It took 2 1/2 hours for 5 minutes of blood draw.

But I sat through it.

 

The doctor was testing me for h pylori.

I had decided a while back,

after Liam's passing,

that I didn't care about my health.

Or rather that I didn't have the energy to worry.

Last night I decided that even though I knew that h pylori was an infection,

I should do more research about it.

So I sat down and spent hours researching.

 

I found that this could be a major reason to my fatigue,

vitamin deficiencies,

headaches,

allergies,

and so much more.

Turns out you don't show symptoms of h pylori unless it's been in your system for years.

If you don't get treated as soon as you notice symptoms,

then it only gets worse over time.

H pylori can even give symptoms of fibromyalgia,

or at least that's what I read.

 

Today for the first time,

I felt optimistic,

positive about something.

Optimistic that there could very well be an answer to what's wrong with me.

That there could very well be a cure.

 

It won't help my PTSD.

It won't help my pain over loosing Liam.

But maybe in getting rid of the physical pain,

I'd be able to work on the emotional pain.

Find a way again.

Or a start anyway.

 

I had counseling today,

and I explained to my counselor that I keep moving forward,

in hopes that one day something will click,

and things will start to feel better.

Things can't be right again.

We just have a new reality that we have to find a way to get through.

Or I have to find a way to get through.

Because it seems that I'm the only one struggling.

That's my reality.

 

 

 

 

 

 

 



Behind The Scenes

Truth be told there are a lot of things leading to this post. On the Bobby Bones show this morning they were talking about how no one posts the gory details or the truth on social media. Everything is sugar coated. When you ask someone how they're doing the automatic response is "great thanks for asking" not "well shitty actually". I've tried to keep things real here and not sugar coat it, but I think I failed. 

I'm always trying to stay positive even when I don't feel positive. That's just how I am, who I am. So let's do some behind the scenes recon here and be real. 

"How are you doing?" Well pretty shitty actually. I'm super stressed. Liam's sick AGAIN. He was just sick last month. We narrowly avoided a hospital stay. It was pretty scary to watch him have problems breathing. Truthfully it brings back memories from the first time I held him and he turned blue on me. They had to call a code blue. I guess before then I never thought about why they call it a code blue and it pretty much freaked me out. I was scared to hold him for a long time and had so much anxiety over it. To say that that experience really messed me up would be to put it lightly. I have a hard time holding other people's babies because of this and when I do get the courage to, it's only for a minute or two before anxiety sets in. 

We're on our last option for home treatment right now. Oral steroids and another antibiotic. He's been on oxygen all week. Today is the first time in 3 days he's gone without it for lasted more than 5 minutes. It's scary. I'm on edge. Our bags are packed and ready to go in case it comes to that. If it wasn't for last nights storm, I would have been driving him to children's hospital. But this morning he's better. This storm has caused us to go without electricity twice in two days for long periods of time. Which is scary when you have a kid on oxygen and the concentrator needs electricity. So not only were we getting sudden pitch black darkness but a loud alarm screaming at us telling us there's no electricity going to his oxygen machine. Yea that 3am wake up call about gave us all a heart attack! It's a good thing we have oxygen tanks. 

I'm not a fan of repetitiveness or alarms to say the least. They raise my anxiety and caused flashbacks so I'm always jumping up the minute they go off to shut them off. I just can't deal with it. My morning wake up alarm is a song on my phone because I can't take alarms. I have freaked out and screamed at both his feeding pump and pulse ox. I've broken down crying in frustration and anger because no matter what I did he alarm would go off. 

On top of it all is Liam's fits today. Crying over everything. Crying for no apparent reason. Crying because he was told no. Crying because he wants the cartoons changed every 2 minutes. Crying because he wants me to make him a specific food then crying when I do because he no longer wants it. Crying because the kitten looked at him wrong. He wanted me to hold him then would use his elbows into my stomach (pretty sure accidentally). Then he'd try to put his fingers in my mouth (not accidentally). 

I would pull my hair out if stress wasn't already helping with that. I'm exhausted. Haven't slept more than 2 broken hours per night in the last week. The circles under my eyes tell the whole sordid "secret". Hiding them is no longer an option, nor do I have the energy to try. I'm drinking a pot of coffee every morning for the last two mornings then another mid day. My bones ache from the electrical storm we had. And my body is in a ton of pain. I haven't brushed my hair today. I barely brushed my teeth. I haven't eaten anything but Gordettos and fruit roll ups today. I'm in need of a shower. I might as well throw my makeup in the trash. And while I'm at it throw away any jeans or tight clothes. 

I feel worse than I look and I look pretty horrible lol. 

I'm wearing leggings and a tank top. Liam's chewing on everything that isn't nailed down... Oh wait scratch that. He's chewing on everything. 

And I wore these "sexy" spider Webb leggings to the bank (drive through) and dollar store this morning after dropping my daughter off at school. At least I was looking for Halloween decorations in my Halloween leggings. Well actually I was looking for colored pencils and got sucked into the Halloween section vortex and couldn't get out. The holiday sections in stores always suck me in. 

And do I care that I left my house looking like that? Not today. I do t care that I went out in those leggings and threw on a sweater or had messy hair and no make up. Why? I'm done caring what others think and could care less about pleasing anyone anymore. I too far gone now that I am unable to hide this walking yard sale any longer. 

I have two priorities:

My children's health

My children's happiness. 

Living with a chronic illness and having a child with a chronic illness goes beyond words. It's hard enough to take care of a child whose always sick. It's takes a lot of energy and patience. It trying to take care of a child with a chronic illness while living with one yourself is a whole new world. I have to fight harder to do what needs to be done. At the end of the day I'm too exhausted to eat  do anything but fall into bed once the kids are in bed. 

And I'm going to admit it, my house isn't spotless. One when you have two young kids running around making 2 messes for every 1 you cleaning seems nothing gets done. I have chronic fatigue as well as fibromyalgia so getting out of bed is difficult for me. Laundry gets back upset times thanks to a dryer that doesn't dry the first round. There's usually always some dishes in the sink. Toys cover the floor I every room because my 4 year olds mentality is that there HAS to be toys everywhere and he's playing with ALL of them, in every room, at the same time. SMH. 

There may be loads of laundry but there's loads of love in this home. We work together. We clean every day even though it looks messy again 10 minutes later. The kids may fight and torment each other but they love each other. I may want to run away from all the chaos and noise sometimes but I wouldn't trade this for anything. 

I knew being a mom and raising kids would be tough. I knew being a mom wasn't for everyone, after all look at my own mother. She didn't raise any of her 3 kids. He couldn't even handle being in her kids lives after they became adults. I knew that once I had kids I was in it for the long haul and I promised I'd never give up, or walk away. I expected sleepless nights, being thrown up on and pooped on. What I didn't expect was this life. I didn't know it could ever get this rough. I didn't know my baby could ever be sick I was expecting healthy happy children. Not one who had to fight for his life from the Minute he was born. 

I didn't expect CDH, chronic lung disease, feeding tubes of any of that her stuff I didn't expect to be exhausted and stressed all the time. I never expected I'd ever have my heart and soul shattered the way it did when Liam was born with CDH. But those were the cards God dealt me and I learned to adapt to the situation.  I learned to embrace it. Because if I hadn't I wouldn't have my little lamb. 

This is my life now. It's far from pretty and perfect. Things don't come wrapped in a bow. It can be gory and ugly at times. But this is my life and I'll defend it until the end. I was shattered but slowly am putting myself back together. It's not instant.  I can't just pop it in the microwave and it be done. Super glue won't hold. It's going to take slow steady careful stitches.

But this is my life and I love my kids for who they are not what I wish they were. 

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. 

Girl talk: the uterus: a bloody mess

Rewind: the last three months have been horrible. Each day worse than the last. I've bled 3 weeks out of every month with horrible cramping. I've hardly ate anything. For a month and a half of that I couldn't keep down anything but fluids. I made an appointment with an OBGYN (her PA really) and went last Friday. 

I explained the bleeding and the pain and the bloating. I told her how I had started pushing myself to exercise with one of those big exercise balls and how I lay flat and transfer it from hands to feet and stretch out and repeat. I explained how it pulled what I first thought was muscles in my lower abdomen and stressed them but realized after the 2nd time that it was my uterus it was pulling and then bleeding would follow. She was concerned that I had ruptured my uterus where my csection scar was. It wasn't impossible for me. We knew my uterus was weak after finding out that it had torn during my pregnancy with Liam.

 We were also worried that the cyst had grown back. I have a long long history with cyst on my uterus and ovaries. It's painful and well, bloody. She ordered an ultrasound but it was a waiting game to wait for insurance to approve. Meanwhile I'm at home getting worse. The pain just continued to increase until I was taking tramadol every 6 hours around the clock and ibproffen in between. Then it became so bad that the meds didn't do a thing. I started swelling up to scary sizes:

I didn't know what to do. I laid with he heating pad on my abdomen 90% of the time and refused to move even an inch. The pain was horrid. It rivaled when I was pregnant and my uterus tore. I started having flash backs to that time because the pain was so bad. But it got worse. 

The pain and the swelling. I looked 9 months pregnant, was having spasms in my uterus to the point I and everyone around me thought I was pregnant. I was scared. 

Thursday I broke down and went to the doc. I was in so much pain and I couldn't stand it. After a being tortured all day long, they finally diagnosed me with pelvic inflammatory disease. Said I had had an infection that went undiagnosed and untreated and it spread to all my female reproductive organs in one massive infection. They gave me a shot of heavy duty antibiotics that stung worse than anything else I've ever felt and sent me home with a script for said antibiotics and norco for the pain. They also found a good sized cyst in my uterus, to the point the ultrasound looked like I was pregnant but without the baby in the sack. They also realized it was throwing off blood clots and causing the excess bleeding I've been doing. No sign of a ruptured uterus. Friday I woke up feeling much better. When I looked in the mirror half the swelling was gone. I started hurting later that day and have been hurting on and off since. The antibiotics cause a lot of pain after they get into my system because they're fighting the infection. It's painful business and glad they gave me norco, although to be honest, they don't help much. Stupid bodies response to pain! I have to call the doc and get an appt to see her and most likely discuss what we should do next with my uterus. Honestly I wish she'd give it the death sentence because all it does it cause me pain. I'm done having kids. Already had my tubes tied but that doesn't stop cyst from growing and they can turn cancerous so I just want this thing out. My grams had hers taken out when she was younger because of the same probs and worse. They were afraid it would finally turn to cancer so they took it out. I don't need the damn thing anymore. I don't need a damn period anymore either! Those are for women who still want to have kids in the future and I'm sick of bleeding all the time. It cost a small fortune every month to supply my pads! Any how, that's what's going on in my world. #deathtotheuterus 

Charging Bull

I've been waiting to blog until my fibromyalgia flare up ended. I thought it's be gone a long time a go but instead this time it's stuck around for a month, with no signs on letting up. Instead I'm get worse with every passing day. 

I'm in so much pain that I can't eat. I just vomit it back up. Liquids seem to be fine though so I've been sticking to dark sodas since they stay down better than clear fluids. I'm not even sure how to describe this other than if anyone knew exactly how I was feeling, then they'd probably have me admitted into the hospital. It's been a while since I've felt this truely bad and to be honest, this episode could very well be the worst I've had. 

But still I hold faith. I'm positive the pain will end (or at the least get better). I believe Gods word that after every storm there will be a rainbow. I'm just waiting for that rainbow to appear. Every morning I wake up and every night I go to bed I hold out hope that tomorrow will be that day. 

I look myself in the mirror and sternly tell myself that today isn't the day we wallow in self pitty but the day put on our brave face and push as hard as we can to make it through the day. Even if that means several naps and pjs. 

I refuse to give up. I refuse to let my heart give up. It's been fluttering more with the increase in pain. I close my eyes, take a few deep breathes and calm myself down. My body is tired after years of stress. I see that now but that doesn't mean I wave the white flag. No.  I keep fighting because that's all I know. I charge forward like a stubborn bull. 

I just pray tomorrow will be better. 

Unanswered Prayers

          I recently sat down and talked with a good friend. I had something I needed to get off my chest but felt I couldn't tell someone. This was something that had been weighing on me for a little over a year and it seemed that for several days God kept reminding me. I didn't set out to tell her (my friend) but as we sat there talking my heart became heavy, my lungs didn't want to function and my brain screamed "let it out". So I did...

"I spent years bargaining with God over Liam.

First it was 'God don't let him die, take me instead'.

Later after he survived NICU and started having all his hospital stays and constant barage of problems the bargain became...

'Please God take away his pain. It's not fair that an innocent baby should suffer. Please take away his pain ad sickness and give it to me instead, anything to make my baby healthy and happy'

 I feel that after years of begging and trying to bargain for Liam to be healthy that God decided to answer my prayers.

Liam started getting healthier.

And I sicker. I feel that I can't ask God to take away my pain and suffering because I told him I would take Liam's place.

I felt this was my pennance and I would bear it and only ask for strength to endure this."

          I had never told anyone this because I felt I couldn't. I just couldnt say it out loud to anyone but myself. I didnt feel that anyone would take me seriously, not even my husband so I kept this secret of mine bottled up. Until it burst free from it's prison. My friend, whom is an answered prayer herself, didn't get frustrated with me as I rambled on almost senselessly. She didnt laugh or think I was crazy. What she did and said to me whas exactly what I needed.

          This friend is a woman of faith. We happen to attend the same church and share the same beliefs. She's not one to sugar coat things and put a fake smile on her face. When it comes to the important stuff, she's real. She's straight forward and isn't going to play games with you because in her words 'ain't nobody got time for that shit!'. I admire this highly about her. This is why talking to her is so easy. 

          After my ramble, she laid it all out on the table. She basically asked me if I knew how crazy I sounded. It wasn't asked in that  mean way some do, but she honestly needed me to hear how I sounded. She went as far as repeating what I had told her in a broken down form.  (The following is not word for word but the just of it)

You asked God to make Liam well and make you sick.

You asked God to make you sick and you think he did?

God doesn't do that.

          I then explained that I even though I realize, rationaly, God wouldn't bargain. He wouldn't trade one for another. He would make Liam better but forgo making me sick in return. But my brain wouldn't listen to that argument. I still felt that this was a penance that I couldn't ask to be taken away even if it was the devil seeing an opportunity to strike and doing so.

          Again she was so patient with me, my friend. She told me that she felt that after years and years of stress with Liam's health that my body just couldn't take it anymore. That it's tired and needs a rest and choose this time, when Liam is getting healthier to do so. Basically to thank God that my body didn't break sooner when Liam was really sick. Again this isn't word for word, just the just of the conversation.

          After she said this, it made complete sense. I just hadn't realized before that this was even an option. I hadn't realized just how tired by body and soul were from our CDH journey with Liam. She made me realize that yea, I can still tough it out and try to do more than my body wants to do right now and pay for it, but I should let it rest. Let my body and soul heal so that I can be me again. 

          I still have yet to ask and beg God to take this pain and fatigue and headached away. I have asked for strength more often and am trying to hadle this with grace and honestly. Explaining to my kids that I'm sick and that some days are better than others hasn't been easy but I'm being truthful with them. They need to know. As each day comes and on days I'm down, I explain what's happening. My daughter, who has the biggest heart ever and is gettin an award this Friday at school for her kindess and caring and helping of others (whoot whoot) tries to help me out. 

          She knows that it's very lonely and upsetting for me on days I'm in loads of pain so she always suggests things we can do together while I'm either stuck in bed or on the couch. We've played games, read books, colored, watched movies. She has a lap desk so when need be, she can get help on her homework without me having to get up and move too much. She is always asking me if I need a snack or something to drink. I hear 'it's ok momma, I can get that' and 'let me help you with that momma' from her more than I've ever heard any other kid say. 

          I remember a conversation I had with my good friend where I explained to her all that Lanie has had to go through with her brother being born with CDH. How she had her mommy ripped from her for almost a month, had to sit quietly in NICU every day all day and see her brother hooked to all kinds of tubes at 3 1/2 years old, how I spent 90% of the following 2 years away from her because of all Liam's hospita stays. I had voiced my concern about how I was afraid that this would scar her for life and that maybe I could have done things differently. But the truth was nothing could have changed. I was needed at Liam's side and hubby with Lanie at home tryng to give her the closest we could to a normal childhood. My friend had explained that this was teaching Lanie to be nuturing and careing and giving and that she could see this in her. She said that I could be very well shaping her future to be a nurse or a doctor and the same for Liam. 

          She reminded me that good always comes from bad. That I believe. So as the Garth Brooks song goes...

One of God'd greatest gifts is unanswered prayers

          All those years of praying to take Liam's place, God choose not to answer. He would indeed make Liam healthy, but he wouldn't make me sick. He knew I had another battle to forge and ensured that I had the strength to fight it and a good friend by my side to help me keep my faith.  

Mamas Got It Going On

But what she's got going on, we aren't 100% sure yet. 

Friday I go have an MRI of my brain done. They're checking for abnormalities, growths, anything that can help explain what's going on. I'm claustrophobic so in very nervous and scared for this test because I will be out into a machine that's dark, cold and reminds me of a coffin. 

It's making me face one of my fears straight on... To wake up and find myself buried alive in a coffen. 

I've been inside an MRI machine before (for my back) and they had to take me out before the test even started because I freaked out. My heart was racing, uncontrollable crying and shaking. It was illogical I know, but I couldn't control that feeling. And the loss of control make it that much worse on me. 

I have no choice but to go trough this test. I will be in the machine for an hour. In two week I will be returning to my neaurilogist for the results as well as an EMS test. It means they're going to stick needles in my arms and legs and to test nerve function. I know for a fact I have some but how bad I'm not sure. Every day I am figuring out that it's worse than I thought. 

I've already had my blood work done to check for heavy metal poisoning. Pretty scary thought to think that's a possibility as well. 

What I'm most scared of is that they won't find anything and won't be able to help me. This means I will have to continue to suffer. Constant pain. Headaches that never fully go away. Chronic fatigue. Loss of memory. I won't ever be able to go back to work because it's so hard on my body. I have days I can't hardly walk or stand at all. Days where I don't have the energy to talk or can't talk. Even insomnia filled nights. 

As far as my Fibromyalgia goes, I'm out of RX options. Either the meds don't work, they make the pain worse or make me violently ill. To my knowledge there are no other RX meds to treat Fibro that what I've already tried. So now in treating myself with essential oils. 

I was a skeptic. I didn't believe that EO's could help anything. I've known about them for years but laughed it off. But recently felt, after the last med change that made me violently ill, that EO's were my last resort. I couldn't say I tried everything if I didn't really try everything. 

So, feeling depressed and desperate for some help, I ordered my free kit from Simply Aroma. No I'm not trying to sell you anything. Just sharing what's going on right now. 

First thing I did after ordering my kit, was to order roller bottles. These are essential for what I needed the kit for to begin with. Once everything came in, I mixed up a headache remedy of Lavender, peppermint with fractioned coconut oil in a roller bottle for easy application. I roll it on my temples, forehead, base of the head, where ever the pain it hitting. 

I didn't expect any miracles. The "miracle headache" med (deemed so by my doc) had failed to do anything so I wasn't expecting this blend of EO's to help at all. 

Luckily, I got a small miracle. The blend eased my headache back down to something tollerable. No it didn't go away completely, but the headache was tollerable, it was almost none exsistant. The pain had lessened so much that I kept having those "wait a minute something's wrong. I'm not feeling pain" moments. When I stopped to concentrate I could still feel a small headache but it was finally something that could be pushed to the back of my mind. 

It wasn't a miracle cure but it helped. I had a good two weeks where I slept better and had more energy. But now I'm in the midst of a Fibro flair and I'm not sure there's much that can help those of that's even what's really going on. 

When a doctor diagnosis you with Fibromyalgia, it's because they can't find out what's causing your pain. Therefor anything they can't figure out gets the label. I'm not happy with the diagnosis. After all if I really had it, wouldn't one of the Fibro meds helped?! 

I'm having more symptoms of MS. Granted, I still have symptoms of lupus but with 2 positive and 3 negative ANA's they say that meds no Lupus.

If they don't find leisons on my brain then they say it's not MS. If it's not MS then there's no reason they can find as to why I have constant headaches, loss of muscle control in my hands and legs, memory loss, black outs and so on. My neighbor thinks I'm having seizures. The kind there I'm still functioning but can't remember spaces of time. Like how I got from one room to another. Or from point A to point B. 

I feel like I'm slowly dieing. Not like, eventually I'll die because everybody does but the actual, my body is shutting down and dieing. One day I just might not wake up kind of dieing. 

This is a scary life to live. I want so many things, simple things. No pain. Tea parties with my daughter. Racing cars with my son. Finger painting in the sun on a nice day. A day without mood swings that are uncontrollable. I want to have the energy to make things like I used too. To go out with my camera and just take pictures and be inspired. I want to be able to clean my house without it costing me days down on the couch. 

I keep praying that one day I'll wake up and all the pain will be gone. That I'll be healthy once again. Happy again. Able to loose weight. I keep telling myself that one day it'll happen. This isn't in my head. If it was, all the wishing and praying would have made it go away by now. If it was in my head I'd be instantly fine whenever I wanted to be and down when I didn't. The only reason I'm depressed is the pain. If there was no pain I would be my normal happy self. So when the doctor asks me if I'm depressed, I laugh at him and ask if he would be if he had constant pain. I'm logical enough to realize this and that helps me get through the bad. 

And even though I'm riddled in pain, and most likely will only continue to get worse until (if) they figure out the cause, I'm trying to stay positive. Trying to remember that there has to be an end to all this without there being an ends to life itself. I tell myself I'll get better. 

I may not know what's going on, but I know I have to keep my faith that God will help the doctors help me. There is a reason for everything and I have to trust that even though I don't understand now that it'll all work out. 

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. 

Exhaustedly Optimistic

I didn't get much sleep last night between the migraine, justin cranking up the heat and him accidentally smacking me and kneeing me in his sleep. But I was able to get 2 hours sleep after taking a back up tramadol and I feel so much better. I'm even in a good mood. That was the best 2 hours sleep I've had in years. Today I head down to Bakersfield to see a neurologist. He's apparently a neuro surgeon and I'm praying he will have some answers and maybe even solutions to my pain and headaches. I would love to be pain free. I haven't been pain free for years or headache-less in about 5 years and have forgotten what it feels like to feel that way. I don't expect miracles. My goals are realistic. I just want the pain and fatigue to ebb enough so that I can have the energy to play tea party and dolls with Lanie and chase Liam around the house laughing. I want it to ebb enough to where I can sleep again and not have to fight my body just to take care of Liam's medical needs. I shouldn't have to barter and bargain with my body to do these things. It would be nice to not have the simplest things drain me. Today I'm feeling optimistic. There's more to life than pain and it's time I got to experience that. 

Irrationally So

          Sometimes life is downright scary. Frightening. Horrible. I've learned a lot yet not near enough in my lifetime.

I'm scared.

          I have no clue what's going on with me medically and I'm getting worse. This last two weeks vertigo and dizzy spells set in. Last night I started getting shaky at signs on stress. The more stressed out I got during a very important meeting, the more my body shook. Uncontrollable shaking. By the time the meeting was over it was bad and easily spotted by anyone who glanced at me. My friend was sitting across from me and noticed. By the end of the night it looked like I had been sitting in the snow a 20 below for hours on end. 

          I wasn't cold though. I sat there fighting my muscles trying to keep them still. That resulted in being extremely sore today. I thought it was a one time occurrence but this morning I started getting stressed and the shaking started again. It took 2 hours to stop this mornings light episode of shaking. 

          Then a little while ago I got a call from my doctors office and became stressed again (irrationally so) and the shaking began again. She informed me that the neurologist I was supposed to be seeing next week was a neuro-surgeon not a neurologist. This set me off. It was irrational I know but I couldn't help it. My stress level escalated, the shaking began and I started crying. I couldn't help it. I have no idea what's wrong with me and I can't control it.

          My brain processed this info as,

What's wrong with me?

When did thing's go from ok to neuro-surgeon?

Does this mean there's something serious and I need surgery?

I just can't deal with this, why won't it all go away.

          I know that I have to go to these specialist. I have to get better. I can't give up. There's no other options in my book. 

          To think that my doctor diagnosed everything wrong with me as Fibromyalgia is preposterous. 

Getting Through Today

Life with Fibromyalgia, Degenerative Disk Disease, Chronic Fatigue Syndrome and whatever else is wrong with me is hard. Being in pain 24-7 with no relief makes doing normal chores hard. Just doing the dishes or vacuuming takes a huge tole on my body. After getting the vit B12 shot a few weeks ago, I have noticed an increase in energy. I am still in pain 
(I'm never pain free), but my energy level is up allowing me to actually get some chores done without feeling like my body was being put through a meat grinder. I have been taking full advantage of this increase in energy and getting as much done as I can every day. I listen to my body and take breaks and I admit I wish I had enough energy to do a deep clean through the entire house, but that's not the case. My kitchen has been staying clean everyday for the last 4 days. All the dishes are done by the end of each day. My counter tops stay cleaned off and disinfected, the floor swept daily. I was able to make a deeper clean in the kitchen as well as my bedroom. Oddly the colder it gets the better I feel. This is the first time in a year and 3 months that I've felt relatively normal. I thank God for the relief, even if it's small, it's still an improvement.

When Life Throws You A Curve Ball

I want to say that life is crazy,

or is it insane,

or just insanely hard?

I'm not sure how to describe my life,

but that it's been filled with one test after another.

They say these trials and tribulations are supposed to make us stronger.

There's also a graphic I saw online that says,

"Don't you think I'm strong enough?"

Well,

No.

I guess not.

I have Fibromyalgia.

It's painful.

I hate being in constant pain,

but I found a way to work around it.

Well for the most part anyway.

That time between major flare-ups that is.

So what happens when I finally figure it out,

and learn to live with it?

God throws me another curve ball.

Another test.

Because a life time of test wasn't enough.

Because in his eyes I'm not strong enough.

Because he just loves me that much??

I went to my doctor yesterday.

My blood pressure is low.

Which is seriously weird considering the stress I'm under.

Helping plan and organize a school carnival is hard stressful work!

I can't tell if my weight is up or down,

because well,

my memory has been tampered with thanks to FM,

and I can't remember what I weight before.

(Liam is almost 28 lbs now if that's any consolation!)

(And it should be because that's amazing!)

(And I'm serious that I can't remember what I last weighed in at,

it's not that I don't want to share)

(although I am embarrassed by it, I know its part of FM)

Anyway....

I got my flu shot.

(yay me for wanting to protect myself and therefor Liam)

My blood work came back.

My kidneys are functioning fine.

My immune system looks good.

I was neg for rheumatoid arthritis.

Here's the kicker though.....

My blood work came back positive for the Lupus marker.

(Just let that sink in for a second, LUPUS)

Lupus?!?!

Seriously?!?!

I didn't even know what that was!

I mean besides your body attacking itself.

And that it was seriously serious.

(Yea I know I said it "seriously serious")

I stared at the doctor.

I mean full on stared at him like

"What the heck man?! You like messing with me right?"

But sadly no he wasn't messing with me.

And how do I know that?

Because he ordered more blood work.

A comprehensive ANA panel to test for Lupus.

So not only did I get crud-tastic news,

but I got stuck my needles twice yesterday,

and I have a fear of needles.

Liam got to watch mommy get 2 owies.

I bet he thought that was payback for all the times I watched him get shots and IV's lol.

My doctor said that because I have several Lupus symptoms,

and that the marker was positive,

that it was important to get the comprehensive panel.

We had to be sure.

After telling me this,

he asked me a ton of questions.

How do you do in the sun?

I avoid going out in it as much as possible.

Why?

Well doc...

It makes me sick to my stomach.

My face feels like its burning and I get this weird sunburn on my face.

And it hurts my eye.

There aren't dark enough glasses in existence to help the light sensitivity.

He looks up at me with this,

"Oh cr@p, why didn't I know this" look.

My bad.

I just figured sitting you down with this huge list of symptoms would make you think I was a hypochondriac and then you wouldn't take me seriously or treat me.

I just figured that because I've dealt with it since I was a teen that it was just something that wasn't a big deal.

Whoops.

So after a laundry list of questions,

he said I had several Lupus symptoms.

Then that's when he got pushy about the flu shot.

He looked at me with wide eyes like he was trying to brainwash me,

and said "why don't we get you a flu shot today"

Me "Um" I look down at Liam and start to answer only he talks again.

Doc "What do you think? I think you should get it"

Me "Yea ok"

How could I deny it when I'm looking down at Liam?

How could I not vaccinate myself when I want him to stay healthy?

Flu shot it was.

For Liam.

But in my arm,

because yea I just "LOVE" getting stuck with needles.

So now Liam and I are vaccinated.

He refilled my meds and added a new one for migraines.

Because having a migraine most days out of the week sucks.

Honestly after the news that I could possibly have Lupus,

I was in a daze.

It's like my brain temporarily froze,

or shut down.

It was my brains equivalent of jaw dropping to the ground.

There were no other emotion at that moment but pure shock.

I thought Lupus has been ruled out last year.

Last December I believe the initial test had come back neg for Lupus markers.

How can it be positive now?

He said that it's probably because there's inflammation in my body associated with the pain.

Uh,

last time they ran the test I was so bad,

I could hardly even walk.

I'm positive there was inflammation there!

And why Lupus of all things?

I don't think I've ever wanted Fibromyalgia more in my life!

The first chance I got last night,

I did a little research of Lupus.

There this one blog of a girl who has Lupus.

Shes been doing Chemotherapy for 2 years to fight her Lupus!

Seriously!

I read there is different types of Lupus as well.

Any way you look at it,

it's not good.

Fibromyalgia is basically a God sent compared to Lupus.

I didn't ask God 'why me?'

Nope.

Instead I prayed that he would grant me the strength and courage to get through this.

If it is Lupus that is.

I wanted to cry.

I honestly almost did while talking to my Grams.

Today I feel resigned.

All I can do it wait until the test result come back.

All I can do is pray.

There was this graphic on FB today:

There was no question about it.

If I could sit on that bench and talk to one person from the past,

someone no longer on earth,

I would talk to my dad.

I wouldn't ask him what went wrong in our past.

I wouldn't ask why he didn't end up with me,

or talk about how different life would have been,

No.

I'd ask what his greatest advice was from what he learned about life.

I'd ask his advice on how to just deal with life.

I'd tell him I love him,

and that I missed him,

that even though I wish I had grown up with him,

that I understood it was out of his control.

Most importantly,

I'd hug him.

So what has been your greatest advice?

What has life taught you?

I've learned life is hard.

If it's easy your doing it wrong.

I've learned you have to work hard and struggle to get anywhere.

And when you get there,

you struggle more.

But it's not impossible to find happiness.

You just have to work to keep it.

You have to be able to see the good in everything.

If you honestly can't see any good in a situation,

you have to be able to get yourself out of it.

That's life in a nut shell.

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.