Monday, April 28, 2014

And the verdict is...

We still aren't sure, but two doctors have finally agreed on what they think it is. Seizures brought on by migraines. So next week i get an EEG which looks like this, and i get to wear that bad boy for 3, freaking, days. With any luck, that will tell the tale. If i am having seizures, this machine, will ideally catch an actual episode, but if it doesn't it should catch the waves responsible for them while i'm sleeping, so keep your fingers crossed, because i am so ready to have some answers once and for all. Short wiring brain, or not.

I also get to go see a Neural-Opthamologist next week, and get set up with a fancy pair of glasses that will regulate the light i am seeing because my light sensitivity is seriously impacting my life at this point.

I was given a new medication to try, but we are holding off until after the EEG, because it's a combination migraine, seizure medication, and we don't want it to interfere with the tests. So hopefully once i get to start taking that, the migraines will calm down unlike the last medication i was given that made them worse. Fun fact, we found out today that the medication i was given by my last neurologist is not indicated for migraines, and in fact, can increase headache severity, worsen depression, and mess with blood pressure. Fun huh?? This gives you an idea of the totally top notch medical care i've received. I guess i should just be glad he didn't prescribe something that could kill me. Nope, that was just the Cardiologist. But i digress.

No luck getting in with a Psychiatrist because as you would imagine near a military post, demand is high, and everyone is backed up at least six months. I can't start new antidepressants until i'm seen by one, so i am working medication free for the first time in over a year, and am so far, not impressed. I know there is this huge stigma about mental illness, and medications for them in this country. But honestly, if you have a problem, and you need help, you owe it to yourself to get seen, and get treated.

Anyways, this is me today. Battling the stomach flu for the 4th straight day, hoping i am having seizures just so that i finally know what is wrong with me, and we can go home and get better. 

Thursday, April 24, 2014

What Undiagnosed Illness Looks Like.

So i guess it's time to talk about something real. The reason i am actually here, doing this.

About 8 months ago, i got, what i thought was the flu. I got dizzy, nauseous, i would collapse, and lost my appetite. When, a week later it was getting no better, only worse, i went to the doctor and we ran blood tests. Everything was normal. But it didn't stop. My eyes started hurting. I was sent to get my eyes check, got glasses, no improvement. I was sent to a neurologist who thought my headaches were from pain meds and started me on medication. No change. I started seeing black spots on my vision. Back to neurology, taken off those meds, tested for MS. Negative. My body stopped fighting the spread of an dental infection, and the infection stopped responding to antibiotics. The theory then became that my rampant infection was causing what is called referred pain and symptoms. I consented to having 21 of them removed, and accepted that at 23 i will have dentures for the rest of my life. No change. I saw a cardiologist, was sent home with a 24 hour heart monitor for 2 weeks, and had a Echocardiogram done. Detected nothing. So 8 months later, here i am, off all of my meds because me and my doctors agree that taking dangerous medication that isn't helping is worthless. Still no improvement. We have a new theory, and it is basically all that's left. Atypical Migraine Syndrome. Basically, imagine a migraine that has taken steroids and has a bad attitude. For some people the pressure and pain can paralyse muscles, or present like a stroke, for others it causes such severe pain that they can't function at all. It's a little different for everyone. What we think it is doing to me, is causing small, fast, and minor seizures. Basically, my brain can't accommodate the severe and constant pain, and in a defense mechanism, shuts my body down for a few seconds. Hence the collapsing, and loss of consciousness. It would explain the destroyer of world headaches, the nausea, the light sensitivity that makes a care ride unbearable, the dizziness, and weakness. It would explain everything. Now we just have to prove it.

In 8 months i have seen 2 doctors, 2 neurologists, a cardiologist, and countless ER doctors. We have tried 6 different medications. I have had 3 CT scans, an MRI, x-rays, and more blood tests than i can count. I have gained 40 pounds thanks to those medications, i've lost about half of my hair, most of my teeth, and my hands almost always shake now. I am 23. I am a mother, and a wife.

I am exhausted.

I am angry.

I see my neurologist again on Monday, where we will, i hope, find out that this horrible neurological condition is what is wrong with me, because i just want this to be over. I want to be treated. I want to be able to play with my son without worrying about falling. The last time i collapsed, i almost broke my wrist. Thank goodness Erich was here, because had it just been me and Thoren..

So i guess i am here because if i didn't unload somewhere, i would lose it at this point, and since there is a 6 month to a year wait for psychiatrists here, i am SOL on that front. But really, i am here, in the hopes that someday, someone who is sick but doesn't know why, will see this. That they will read these words, and know they aren't alone. That they matter. That their symptoms aren't in their head. That they aren't crazy. Undiagnosed illness is a thing, and it is terrifying. Even more so when everyone around you keeps telling you there is nothing there. You are not alone, and DO NOT let them ignore you. Trust your gut, because you are the only person who truly knows what is normal for you.

You are NOT alone. You have options. You have a right, and responsibility to fight for yourself. It is okay to be scared, it is normal to feel overwhelmed. But don't give up looking. Never give up searching for an answer, and a treatment. You are worth it.

You are not alone.

Friday, April 18, 2014

To Be, or Not to Be.

So here is the thing about being a parent. I know every article and book out there tells us that we need to fight to maintain who WE are, and what WE love, and we have to keep working on OUR goals after the little one is born. But that is a lot easier said than done. See, when Thoren was born, my priorities shifted, and for the last 15 months he has been the point from which my own personal universe orbits. He is the reason i wake up everyday (generally, literally), and what has kept me going through a very difficult year. Knowing that he needed this, or this needed to be done to ensure he was getting the proper nutrition, stimulation, or affection. That has kept me focused.

Now that he is getting a little more independent though, and might be spending more time in social situations without me -gulp- i have started thinking about school for myself again. About getting a degree before he starts grade school and start schooling him full time (we plan to send him to an educational preschool if we find one we like ages 3 and 4, then want to start homeschooling at 5 with kindergarten). I know what i want to study, and i know i "deserve" to pursue my interests. But i hate the idea of things that take time away from my family.

With Erich in the Army, we have spent a lot of time apart. He missed the last trimester of my high risk pregnancy, and the first month of our sons life, as i was recovering from an emergency C-Section. 4 months here, a couple weeks there, days, weekends, nights. It all adds up. To roughly a third of our marriage so far. Goodbyes suck, but waiting is the worst, and despite what they tell you, reunions aren't worth the waiting. So with that in mind, i think it is reasonable that i don't like the idea of willfully taking time away from them.. I like to think it won't scare me or bother me so much when he is out. I like to think that eventually the idea of doing something just for me won't make me feel guilty. But i really don't know anymore. The thing about being the "constant" is that responsibility becomes habit. You feel like it is your job to be the one at home, the one with the baby, the one who makes the house pretty, who makes it home. You get used to being the one that waits for him to come home, for your chance to relax, or your chance to follow your interests. You get comfortable with coming last for yourself.

This is NOT to say that this is how my husband sees it, he begs me to go do things for myself, and is more then willing to take the stay at home parent roll once he is out of the Army so that i can open the business i have been planning for years. He is so supportive, and i think would dance a jig if i signed up for classes. But there is something holding me back. Keeping me stagnant. I love our life together, i love my son, i LOVE being with him all the time, and i will never get enough time with Erich. So maybe it is comfort keeping me here. Maybe it's fear or guilt. I know eventually i need to take a leap, but i just can't tear myself away just yet.

Someday.

Wednesday, April 16, 2014

A little crunch.

In the 60's and 70's they were hippies, the 80's and 90's saw a bohemian revival, and here and now, the earth conscious are called "crunchy". I guess you could say i fit into that category. I don't use harsh chemicals, i used plant based cleaners, detergents, body products, hair products, and make up. I use essential oils to help me sleep, to tackle colds, and to ward off enemies of the insect variety. I even cloth diaper my little one (who doesn't love a truly fluffy butt?!!). I never really thought of myself in those terms though, i just always saw it as responsible. Plus, my skin is CRAZY sensitive, so yeah, girl's gotta be careful about what she touches, so NO chemicals for us.

But as time goes on, and i grow up, the better i feel about these choices, the happier they make me. They are simple little life changes, that add up. Like the whole "using essential oils to keep bugs away" thing for instance. Do you know what goes into mainstream pesticides? Nothing good. Instead, a little bit of peppermint and cinnamon oil spritzed around the windows and doors, and you accomplish the same thing, protect your family from harsh fumes, and keep that crap out of the air and atmosphere. For some awesome essential oils i use, and recommend Spark Naturals, they are high quality, fairly priced and get the job done. I use their dream blend religiously, and their respire blend saved me when i had the flu.

Cloth diapers.. I could (and probably will) write entire posts about how much cloth rocks the ever loving socks off of disposables. For one thing, name brand disposables take take forever and a day to biodegrade. They are made with harsh chemicals and treated with bleach of all things, dyes, and perfumes. They are awful for tender tooshies, and they pile up fast. The average infant goes through roughly 2,920 diapers in one years. My diaper stash is about 20 strong, enough for about 2 and a half days with normal consumption, i wash every day. My stash cost us $600. Want to know what a years worth of disposables will run you? On average in America, that number is $2,533.44. For one year. My 20 diapers will last until he potty trains. So aside from the occasional adorable print that i can't pass up, my diaper investment is done. AND? I will be able to use them for the next child. For those at home who don't want to do math. The typical age for kids to be potty trained is about 3 give or take depending on the kid, the average family has 2 kids. That is 6 years of diapering, add in lets say another $300 dollars in cloth costs for when they wear out, and i will have saved, wait for it, wait for it... Just around $14,300. I'll wait while you get your heart rate back under control..

....

You okay? Okay. This is not the cloth of our parents, and grandparents generation. We aren't talking safety pins, and complicated folding, though if that is what you prefer you can totally still do that. For more information on what modern cloth diapering looks like, i highly recommend checking out Kelly's Closet Cloth Diapering 101. It is very informative, and lays it all out in easy to understand language that makes cloth accessible to everyone. However if you are attached to disposable, or can't do cloth for allergy or logistic reasons Honest.com  has a line of diapers that biodegrades within a year, and is chemical free, and their prints are adorable. 7th Generation also has a good product that crunchy mamas swear by.

As for cleaning products, you really can't beat Honest.com. I use their bathroom cleaner, multi-surface cleaner, glass cleaner, hand soap, dish soap, and dishwasher detergent. Everything is plant based, smells divine, and is safe for a house crawling with kids or critters. I also use many of their body products, like their body wash, lotion, healing balm, lip balm, and body oil. Again, plant based, and they leave you feeling soft, not oily, and the smell.. My goodness, the smell. Mmmm..

So this is my crunchy, hippy, dippy, life. Doesn't seem so weird huh?

Tuesday, April 15, 2014

The World's Most Difficult Job.

So as i am sure you have seen, a video is making the rounds on the Internet today, of a series of fake interviews held by a company in Boston. The requirements for the job were extensive, and seemingly inhumane, things like "no breaks", "eating only after the associate has eaten", and on and on, the perspective employees growing more and more flabbergasted as the interview proceeds. Then at the end, to the surprise of no mother ever, it is revealed that the position they are referring to is that of "Mom". Que heart melting music, and the interviewees falling to pieces about their own Mommas. It's very sweet, if a little cheesy. If you would like to see it you can do so here

As a mom, yeah, i had a moment of sniffly pride, because being a full time mom IS all of that they described. It's long days with no breaks, it's missing meals, and sleep, and being expected to have all the answers. But what they didn't talk about, and what i feel is often neglected in this conversation is, "why?". Because it IS a choice. There is nothing that requires women to put their lives on hold (or men, there are plenty of completely kick ass full time wonder dads out there, and they deserve their moment too) and give all of themselves to another person. It's a choice, that is made over and over again, every single day. It's hard, it's sometimes thankless, and there will be times where you question the decision. There are those that have children, that never really earn the parent title, and there are natural parents without the benefit of kids. It is not for everyone, and there are plenty of differing schools of thought on the subject. A lot of it is chance and luck, but most of it is love. Blinding, all encompassing, earth shattering, love.

See because when i am up in the middle of the night with my toddler curled up on my chest because his teeth are killing him, and he needed his Mom to get comforted enough to finally sleep and get some relief, i don't feel cheated. They are some of the best nights I'll ever have. I hate when my little boy hurts, and i will always want to take that pain away, and for maybe the only period of his life, in some small way, i can. He will never need me as much as he needs me now, ever again. Every day he grows more independent, smarter, more curious, and it is a wonder to behold. To have been present for every single one of his firsts. To watch on with unfettered gratitude at having the privilege of doing so.

There are day that are hard. Hard on both of us. Days that i am not the mother i want to be. Days that i lose patience. Days that i phone it in, and let him spend most of the day on the couch curled up with me, watching his favorite movies, because we are both too tired, and too frustrated to do anything else. But then there are days that take my breath away. Watching him play on a playground for the first time, seeing him experience rain, watching as he figure out a new toy, a new trick, a new skill.. Watching this incredible little person, that i helped create grow, flourish, and thrive, and become a clever, sweet, funny, little boy. It's hard. But my gosh, is it worth it. I may not get paid, but i have something so much better. I have the adoration of a little boy that has spent every day and nearly every hour of his life with me to this point. I have the appreciation of a husband who works very hard to give me the right to be a full time stay at home mom, because we both feel it is important for one of us to be with him. But i think it boils down to love. I have oceans, unfathomable depths of unbridled love seeping out of every wall in our home. It's in every hug, every kiss, every afternoon spent cuddling, or playing, reading, or napping. It's in the good days, and it is in the bad. It's in my son's eyes and my husband's arms. It's watching the two most important people in my world play and learn together. It's everywhere, and it's everything.

I am very, very, lucky.

Monday, April 14, 2014

Obligatory Inaugurals

So here i am blogiverse, my name is Ashley, i am pushing 24 years young, i am happily married to a man i am deeply, and perhaps, insanely in love with. We have the most amazing little boy who is about to celebrate 15 months on the planet Earth, and i am pretty darn fond of him too. We live in Texas where that handsome husband fellow i mentioned is stationed with the United States Army, and where we are aching to be free of. The Lone Star state can be lovely, Blue Bonnets are gorgeous to behold, the storms will take your breath away, and Austin.. Oh man, Austin.. Austin is FABULOUS. But no, if i am being honest, i am not a Southern girl at heart. I was born and raised in the Pacific Northwest, and got to spend one incredible year in Monterey California, and those areas are so much more my speed. So you could say i am counting days until hunky husband's contract is up, and we get to head back North and West of here and never look back.

So what might you see here? Well, i'm a mom, so you can rightly assume that you'll see me bragging about the world's most perfect boy with a steady regularity, and i am an "Army Wife" so you'll probably hear bits and pieces about that too. But, i am also an artist, a writer, a singer, a bookworm, a fangirl, a gamer, a tattoo enthusiast, a history nerd, and a photographer. I love comics, cosplay, renaissance faires, fantasy, musicals, Egyptology, and cultural anthropology. I am writing a book series as we speak, and have another outlined, and if i am very, very lucky, someone other than my family may someday read them. So really, what you'll see here is life. Beautiful, exciting, terrifying, and tragic, i have come too far, and gone through too much, to start holding back now. It's boring, and it's not my style.

So, welcome! We're going on an adventure.