Forgetting Who I Am

I sit here and ponder where my life went. Where it's going. I can honestly say that I don't know.

There is no grand scheme, or plan. I have no foresight into the future. Not even an idea of where I want to be.

What I do know is that life is hard. It's always been hard for me but continues to get harder with each passing year.

When I was younger I had big dreams. I wanted to be an actress, singer, doctor, designer, balerina, princess, vet and more.

When those dreams started getting more realistic, I wanted to be a interior designer, writer, doctor, vet, poet, photographer, accountant.

The one thing that never changed was the fact that I wanted to be a wife and a mother. I knew I would love my husband (whoever he ended up being) and I would love my kids (unconditionally no matter what). I just didn't know that one day I would loose myself and only ever by a wife and a mother.

As it stands today, I have no idea who I am besides a wife and mother and someone who suffers from fibromyalgia and who knows what else at this point.

When I married my husband, I felt like a new door was opening and life would just miraculously improve. I didn't realize that the "in sickness and in health" or "for richer or for poorer" would actually come to play.

We've had many years of poorer and many years of sicker. I wish I could say that after almost 10 years of marriage that things we're getting better but some might not think so.

You can't compare one life to another. Financially things are slowly getting better. I never wanted to be rich. I'm happy with the bills being paid and the kids getting what they need and a few extras here and there.

Heath is a sticky subject. Liam, my Congenital Diaphragmatic Hernia survivor with chronic lung disease, feeding tube and so on, is getting better with each passing year. However I am getting worse. I was diagnosed with Fibromyalgia, chronic fatigue syndrome, chronic headaches/migraines. I'm also in the midst of testing to find out what else is wrong with me.

My health issues have caused tension and fights between my husband and I. Fibromyalgia is an invisiable disease that no one believes in. If you could see FM, it would look like my entre body was bruised, purple and blue.

Because of Chronic fatigue and headaches, I have no energy. I find it hard to do daily tasks like cleaning the house. Simple tasks like getting out of bed and getting dressed drains me. I don't get done what needs to be done on a daily basis and this causes us to argue and fight creating more stress on me.

In return, on the days I have more energy, I overdue it trying to catch up on what didn't get done in the previous days. Overdueing it causes flare ups where I'm stuck in bed or on the couch hardly able to move.
 
In all this I am forgotten who I am.

I use to carry about my camera wherever I went. Every moment was a photo opportunity. Now I can find the energy or the passion to go near my camera.

I love to read. You'd think that was something I could actually do in the midst of all this when I'm stuck in bed but honestly, lately I've been too exhausted to read. When I do read, I can't remember what I read thanks t brain fog.

I use to be so crafty, always creating something. These days I don't knock out very many projects. New items don't get added to my online store because I can't knock any new projects out. What I create takes a lot of energy, time and pain.

Everything that seemed to make me happy is something that I can't do anymore. Everything I thought was "me" I lost.

I spend all my energy taking care of my family, being PTA secretary for my daughters school and whatever energy I have left I spend spreading CDH awareness.

So who am I?

Friends on facebook tell me I'm strong because of all I've been through with my son, taking care of him. I get called a life saver because I always have extra medical equipment and breathing treatment's and help others in a bind. I help others because I know what it's like to need the help and not ever get it. I know what it's like to have to rush my son  to the hospital because his asthma and chronic lung disease or a million other reasons, when the trip could have been avoided if I had what I needed.

But when it comes down to it, I don't know who I am.

I don't know where life is going to take me.

Most the time I don't even know what I want. I usually forgo whatever I want to buy my kids things and lately I've been faced with having to actually buy something for myself. I went out several times to buy myself a new easter dress. Nothing fancy, just something to wear often because it's getting hotter and harder for me to wear constricting clothes. Each time I've gone out, and had a dress in hand, I put it back. When I go to buy one, I think of the shoes I shoulf get to go with it, then my feet start hurting. Then I start worrying that the dress won't be loose and comfortable and instead be restricting and cause pain. That's when the dress goes back.

I know I don't want to live in California anymore. That the elevation in Colorado was better on my body, easing my pain to almost none. I'm practically begging my husband to move. I'm not sure how much longer I can deal with being  here knowing that I feel better living somewhere else. I aso know that leaving the family we have here in California will be killer. And not killer in a good way.

I also know that I still love my kids and my husband. And that I need to find myself again.

My husband asked me what makes me happy and he didn't mean him or the kids. I honestly had no idea what to tell him. I cried when I couldn't answer. When my first instinct was to say "being pain free" I wanted to cry even more.

So my number one advice to all moms is to not loose yourself. Yes your a mom, but that's not who you are. You can still make time for yourself, do the things you love and raise a family.

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. 

My Beeping Life

Since Liam's birth, beeping has been an ever present exsistance in our lives. From the med machines and monitors and ECMO circuit in NICU to the feeding pump and pulse ox machines at home. 

Over the years the beeping and alarms have become a source of distress and anxiety for me. The pulse ox blaring in the middle of the night to inform me that Liam's oxygen levels plummeted because he forgot to breathe in his sleep (he has sleep apnea) or because his lungs are comming down with infection and aren't working as well as they should. The feeding pump with it's constant alarms saying "flow error" yet there being no blockage in the line at all. 

The last one has become such a source for my anxiety that it's probably raised my blood pressure and set me further back in my PTSD/depression/anxiety recovery. It had gotten so bad that I would sit there after hooking Liam up to the feeding up at night and nervously wait for the alarms to sound because the questions was "if" they would. It was "when" they would. 

At the end of our journey with the Joey pump, and Liam's gtube issues last month, my anxiety had gotten so bad that I would just sit there shaking and crying EVERYTIME the pump alarm went off. If the alarms would go off while I was sleeping, you would have thought bombs were being dropped on my house. It's not a metaphor, this is how it all felt. 

It affected my PTSD so horribly that I started having nightmares again about NICU and Liam's birth. I couldn't hardly sleep and started having flash backs again. Going out into public places became an issue again as well. If there were more than 2 people within a 20 foot radius of myself, I just had to escape. I would walk to a different part of the store and if it continued to happen, I would just leave. 

I never imagined a beeping sound could hold so much power over someone. Never thought anything would effect me the way the alarms do. And even though it's been 2 weeks since we got Liam's new feeding pump (the infinity) and he had his gtube surgically fixed, I am still dealing with the effect of the beeps. 

The slightest beep will wake me up from a dead sleep disoriented and freaked out.  I have issues listening to even the beeps of items being scanned at the store. And all I really know is that this is my beeping life thanks to CDH. 

The beeps aren't going to go away. They're effect on my won't stop with a snap of the fingers. Even tonight being woke up in the middle of the night by Liam's machines was an extremely stressful event. What they represent is an important part of our lives that we can't just turn them off. So I must endure the mental and sometimes physical pain these beeps cause me because it's for the greater good. That act doesn't make me anything special, it's just means I'm a mom who loves her baby boy more than herself and will always put him ( and her daughter) before she does herself. 

Cold & Flu Germ Buster

Germs are a HUGE deal here in my house. My son has a weakened immune system and gets sick easily because he was born with Congenital Diaphragmatic Hernia. Because of this we have to keep the germs down to prevent any of us getting sick because when he gets sick, he usually ends up in the hospital. Here is a great cold and flu germ buster so kick those germs to the curb:

17 drops peppermint essential oil

17 drops eucalyptus essential oil

4 oz pure water.

Mix in a spray bottle (glass or metal) and spray the house. Not only will it kill the germs but it’ll make your house smell amazing and it’s all natural and safe for kids and pets. Shake well before each use.

Follow my essential oil tumblr blog here http://simplyaubin.tumblr.com

Buy essential oils here: http://www.simplyaroma.com/aubinbryant

2 Month Journey

So.... Life's been a bit crazy. We went through 2 months of Liam being in pain caused by his feeding tube. GI thought it was just irritated, then changed her mind and thought it was an inner infection. We did a topical antibiotic cream for a week that did nothing.

(Image is of Liam fast asleep on my lap after crying himself to sleep from the pain)

Then Liam went on a 10 course of one antibiotic that even fights MERSA "just to be safe". That did nothing. 

Then we tried a second antibiotic (Clendimiacyn) for a 10 day course. That didn't nothing. For two months he just kept getting worse and worse. Crying constantly in pain. 

Finally they scheduled him for an ENDO so check and see what was going on, with a biopsy and possible relocation. This was last Friday (Feb 27th). We were sure his tube was just going to have to be relocated. 

All I really knew for sure was that my baby boy wasn't getting all the calories he needed and was loosing weight rapidly. I cried with him because I had done all I could to help him. I even tried numbing his stoma with lidocaine to no avail. 

(Image is of Liam playing with a balloon I devised to distract him from the pain. He's wear size 12 month shorts and they're barely holding on. You can also see his ribs and hipbone) 

(Image is of Liam with the kind nurse who was wheeling him to OR. She taught him to say beep beep to everyone all the way down the hall. Everyone was in a for of laughter as he passed)

We discovered a lot from the ENDO. Turns out Liam's stomach lining had grown almost completely over his feeding tube causing an occlusion. Basically there was just the tiniest of a hole allowing formula to go through. This was why the feeding pump wouldn't work. This also caused his tube to be pushed into his stomach lining creating very painful pressure sores. 

(Image is a scope shot of the inside of Liam's stomach where the stomach tissue had grown over his feeding tube all bit that one tiny hole)

His GI cut away the tissue that was creating the blockage and cartilized the area to hopefully prevent this from happening again. When he came out of the operating room and told me this and gave me the pictures, I was shocked. But I was also please that this was not only an "easy" fix (nothing is ever really easy when it comes to Liam) but it was fixed and my baby boy would no longer be in pain. 

(Image is a scope shot of after the GI cut away the extra tissue that had grown over the feeding tube)

In true Liam fashion, he came out of anesthesia rocking it and shocking everyone. 

 

(Image is of Liam being wheeled into recovery with the nurses flocking behind him like moths to a flame. Everyone just loves him) 

No one ever expect anyone to come out of anesthesia alert, happy and ready to eat so when Liam is just that, it baffles everyone. 

(Image is of Liam drinking his apple juice to prove he can keep it down. He also ate all his Grahm crackers and asked for more)

They said if he held down the juice and crackers he could go home. Well it was a no brainer because Liam always handles good fine. In fact he always comes out of it starving. They said to take it easy on his stomach but like always, Liam wanted French fries about 20 minutes after we left lol. 

(Image is of Liam giving two nurses high fives while all were wearing gloves. He thought he was awesome)

After 20 min in recovery, Liam was discharged. The nurses tried so hard to talk him into staying with them but Liam said he was ready to go. 

Since surgery, Liam hasn't eaten much by mouth. I've been keeping up with his daily bolus feeds to help catch up on the weight he lost. He's been able to be on a feeding pump for 12 hours a night so far though and that hasn't happened in months! He's also been on oxygen 3 out of 4 nights since surgery. 

(Image is of Liam just relaxing as he gets a bolus tube feed) 

Now that the pain is gone, I've got my happy little boy back. In fact his like a new kid. He's onry and back to "causing trouble" and being Liam. Finally I get to hear him laugh at the world as if everything is funny again. I LOVE IT!! 

(Image is of Liam taken tonight with his arm raises so I can see that sister drew on his armpits with blue marker. Yes both pits! Why? Because she wanted him to "look funny". Well it worked lol)

Kindness

Today is Kids Day and as I had over my dollar bill to get my paper I am flooded with emotions. As I drive away, I fight against this flood of emotions that wants me to cry. To let loose and set it free. And I'm reminded that I'm still living with PTSD from having my own child in the NICU/hospital. 

Today the emotions were harder to control and a few tears slipped past the barrier. I would have laughed at how ridiculous the whole situation filled but the truth is, it's not ridiculous. It real. It's honest. What's ridiculous is to think I should hide this "brokenness". 

Am I really broken just because I get chocked up at the sight of a baby in the NICU fighting for her life? Am I really broken because I feel for that babies parents and wish I could make it better for them? 

No I don't think I'm broken. I'm me. My experience has made me stronger. It's made me want to help others who are going through this rough journey. It's not easy to have a child in the NICU or in and out of the hospital. So if my only scars are these emotions that I wear on my sleeves then, I can live with that. 

I can be over sensitive it's true, but that sensitivity has allowed me to key in on my son and get him to the hospital before his health declined drastically. It's given us a leg to stand on in our many fights against pneumonia and RSV. 

I'm living with PTSD. I'm not sure I'll ever be cured but I'm not going to hide behind a fake smile. I'm going to let these emotions fuel my fire to help others.

CDH awareness week is comming up (March 25-31). Do something nice for someone in the name of CDH awareness. Breath of Hope  Started the Kindness Project to help spread awareness and I hope you will all join in. 

And of you live in our area, look out for the volunteers wearing bright orange kids day vest and pick up a copy of the Kids Day paper. The money benefits Children at Children's Hospital Cental California (Valley Children's). Read Olivia's story on the front page.