Mountah Ash's Musings

The musings of a chronically ill girl named after a tree.

(Comments are virtual hugs. Please leave me some.)

Friday, December 5, 2014

This is a post about my health. Feel free to ignore.

Lately more then a few people have told me I should let people know I am sick. I mean, almost everyone knows I'm sick, but probably not exactly how sick I am. Part of the reason for that is I really don't want people to know. I feel selfish every time I talk about my illness, even though its part of my every day life. Maybe a small part of me thinks that, if I can avoid telling people, then its not real. The more people who know, the more real it becomes. Frankly, I have been refusing to admit all this is real. I am slightly stubborn. Granted, it has been ten years since I started getting sick, but I mean honestly who willingly admits to themselves that nothing in their life will be the same because of a stupid little bug bite? Not most people, that's for sure.

I was asked to sit down with certain people, and talk with them about my daily life, the sickness.
That scares the hell out of me.
I am going to talk about it here, where I cannot actually see peoples faces, and if they give me the "Ugh, dramatic brat." look.
 Please PLEASE if you do not want to actually know, or if you think I make things up, or if you think I am exaggerating, PLEASE stop reading now.

If you read this, and its not enough information or you wish to know more, I will talk with you. Yes, it scares me, but it has been brought to my attention (possibly by my boyfriend) that not telling people is a bad plan. Apparently my theory of "People wondering why I never leave the house and judging me is better than not being asked to go anywhere" has a few flaws. Ugh. Logic. 

I was bit my a tick. Though I am not sure when, by symptoms I can assume I got bit once around 8, and again around 14. I think the bite at fifteen gave me Bartonella.

I have Lyme Disease (Borrelia), Bartonella, Ehrlichia, and Babesia.

Things started to get bad when I was 8. I had to sit out of karate class a lot of times because my wrists and ankles hurt too bad to join in. Ever since, it has been getting worse. I am not going to tell my whole life story of dealing with doctors and things, not in this post anyway.

 I don't leave the house often. Most of the time, I will say "I am sorry, I can't go" to anything asked. And most of those times, I really do want to go.
   However, I literally cannot leave my room most days. I spent 8 days unable to leave my room because my anxiety was so high, that anyone even looking at me made me start shaking.

 If you were to read a symptom list of any of these diseases, assume I have most of the symptoms. Because I do.
Because at least two of my diseases are in my brain, I have a lot of really odd symptoms. 

I have a headache almost every day. Honestly, when I wake up without one it freaks me out. Its so strange.
On that evil hospital pain scale, it is rarely below a 4 and is usually a 5 or 6.

When night comes, I don't sleep well. Reason being my brain decides to think it hears sounds that aren't there. Humming, clicking, dogs barking. My eyes decide to see things that aren't there. Shadows (never actual things) peering at me, and creeping me out. My skin decides to feel things that aren't there. Burning, ice cubes, things biting. Occasionally I will be woken up by what feels like an arm brushing my skin, and seeing a shadow moving away (or worse leering at me). 
Because of this, I don't get much sleep and combined with my fatigue, I take a lot of naps.

At 7am, 9am, 2pm, 4pm, 5pm, and 9 pm I have to take a handful of pills. At 11am and 10pm I have to do Iv meds. (Not counting my 3x a week B12 and my nausea meds whenever I need them.)

When I leave the house, half the time I have to take a one of my tranquilizer pills to stop an anxiety or panic attack. The other half, I am so tired after an hour or two that I sleep for five hours when I get home.  

My legs randomly go numb, which makes it difficult to walk and also I cant feel things. Which might explain why I have so many bruises that I don't remember happening.
My lymphatic system is angry with me, so certain spots on my body, if even brushed gently, swear they are being punched.

I have several spots on my body that like to pretend there is a knife sticking into it. Unfortunately, its rather realistic.

Probably one of the most annoying things is my inability to think correctly. I have one or two days a week when this is not a problem, but the rest of the days I slur my speech, can't read, can't remember what I said five minutes ago (Today is one of them so this blog post is taking me several hours, and I keep forgetting I'm even typing) and saying stupid things.

There are a LOT more symptoms but I am bored with myself, so I am not going to get into them. These are the worse ones, the ones that effect me almost every day. All of these symptoms are bad enough on their own, but they are almost always together.

I am on medicine yes, but it makes me worse a lot of the time.
Yes, if caught early all this can be cured with a few months of antibiotics.

But right now, these diseases are trying to kill me. And I'm barely keeping them at bay.

So please, don't be surprised anymore when I answer your question "How are you?" week after week with "I'm okay." or "Not so good."  Because I havent been well in many years. I don't remember what healthy is. I am in this for the long haul.

Monday, September 1, 2014

Its hard sometimes. To wake up some mornings and know life will never be the same.  I get really upset about it sometimes.  I spend  the day depressed, but then I remember. Not only will i never be the same girl i was, i dont want to be. That girl had potential, but she was whiney and selfish.  Who I am now, is a totally different person. And that is okay.

I have almost always wanted to be in the medical field somehow. And this is preparing me for that. But dispite that, I still get waves. Waves of uncertainty. Sometimes, I wake up with them. Sometimes it happens when I am prepping my IV bag. I think to myself I am barely 18. I shouldnt have to know how to do this. I shouldnt have to be responsible for the tube going directly into my heart. If I make one mistake, it could cost me. Cost me my health, or possibly my life if I make a big mistake. And sometimes I dont get over that for a long while. But I remember this is my life, and there is nothing I can do about it. And there are two things I remember. I would never wish this on someone else, and I would never wish this had never happened.

Some people would and maybe will read that, and think wow, she just wants the attention. Maybe thats true sometimes. Maybe I do want the attention. But mostly I want attention, not for myself, but for my diseases and my illnesses. To bring to light exactly what Lyme, Bartonella, Babesia and Erlichia can do, alone and combined. The horrors they inflict on your body. How drasticly they change you.

 They say your diseases arent not you and that they dont make up who you are. But I think they do. They become a part of you. Some days I dont know if how I am reacting to something is me, or if it is my disease. They change you, and they make you a different person. Sometiems for the better. Sometimes not so much.

I hated who I was. I was not a good person. I made horrid mistakes at a young age, and I was barely sorry. I was losing who I was, I was losing my good relationship with some of my family and I was losing my relationship with God.

The sicker I got, the more I realized how wrong I was. People who dont know I am sick and havent seen me in years say something seems different. Something is different. I am a whole different person.

To be totally honest, sometimes I am afraid to be healthy. Iam afraid that if I get well, I will go back to being that person. That person who I hate. That person who I can rarely talk about. I want to be healthy. But I dont want to be her.

Sometimes it is possible to be scared but also at peace.
I will never be the same. And that is okay.

Wednesday, June 11, 2014

Just the clay

I sometimes get angry for being so broken. Angry at God, angry at myself. But you know Isiah 64:8 says "yet you, LORD, are our Father. We are the clay, you are the potter; we are all the work of your hand."

That made me start thinking about when I used to do pottery. I had to work then hell out of that clay to get it how I wanted it. 

So here is my prayer in spite of the pain

Lord, take me in your hands. Break me, so that you can mold me into the woman you need me to be. Amen.

Tuesday, February 25, 2014

I Am

I am Broken and Afraid
I wonder if I can make it through another day
I hear my illness mocking
I see things in a different light
I want to live a normal life
I am Broken and Afraid

I pretend that everything is okay
I feel like I am held together by tape
I touch the jagged edges of myself, wincing at the pain
I worry that I will never be well
I cry almost daily from the pain
I am Broken and Afraid

I understand that I cannot give up
I say God will get help me through
I dream of being well; while being destroyed from the inside
I try to live a normal life
I hope I will have that one day but for now
I am just Broken and Afraid

Tuesday, February 18, 2014

A life is a life no matter how small

I have heard a lot of people lately saying how abortion is a woman's choice.
And I agree. It is a choice. But not one I would make in a million years.

It is said that before the "fetus" is 12 weeks, it is not a real person.
because we cannot PROVE that a soul exists
because, if we admit that the child (No. Not fetus. Child) has a soul, then it would be wrong to kill them.

Look at this photo please.
Do you see this child? This is a fetus at 11 weeks. Legal to abort. 
Do you see that face? The delicate little nose. 
Do you see those eyes? Ones that would love to have the chance see the world they are being denied.

Yes, you can say you would be a horrid mother. Or that they will have an illness that will make their lives not worth while. Let me tell you--As someone who lives with a chronic illness.
As someone who suffers daily
Even if there is one happy moment it makes everything else worth it.

Who knows who that child would have become? What wonderful things they could have done with their lives. The impressions upon others lives. 

This is a fetus at 12 weeks. She will respond to touch. She gurgles with her mouth when she is happy. The brain is forming, ready to meet her world. 
Look at those beautiful little hands. How could anyone deny her the joy of feeling with those little hands?

I say that if you have sex and a child is conceived, then that child is yours to bring into this world.
Yeah, it is a woman's choice. 

If I chose to kill myself, that would be my choice. My womanly choice. But that is wrong because I am recognized as a person. 

If I chose to kill someone, that would be my choice. My choice as a Woman. But I would be put in jail for taking a human's life. 

Just because the worlds "Fetus" "It" and "abort" are used, it does not make it any less horrific. 

Some people might read this and get angry with me. Maybe saying "what about if a woman is raped?" 

Yes. Rape is horrible. It is a horrific, horrid thing that I wish would leave this world forever. 
I know this is a really hard subject. 
And if anyone reading this has been raped, I am so, so sorry. 
But just because you have been wronged, it does not mean you should end the life of the child inside you.
Yes, the child was made through horrible circumstances. But maybe that child of yours is the one who will help you get over the anger and shame of what happened.

Thursday, February 13, 2014

My right leg might be immune to bruises

An actual argument occurred between my sister and I. For some reason, she does not think it is possible for someone to have a body part that is immune to bruises. I will have to do some more research on this to prove my point. (And by research I mean punch myself in the right leg again and watch as no bruise appears)

 Me: I am immune to bruises.

Jenna: I wont even dignify that with an argumentative response.
 [that might be a slight difference from what she actually said, but in my mind she is always all smart and sophisticated, so that is how I am writing her.]

Me: Seriously Jenna, I dont have a bruise on this leg. My left leg is covered in bruises that I dont have any idea how they get there, so I wanted to see how easily I bruised and punched myself in the right leg. AND THERE IS NO BRUISE! Its like, my right leg has an epic immunity to bruises. Its my superpower.
 [I had actually said this a lot less clearly. Maybe if I had said it exactly like this, she would have realized how right I am]

Jenna: There is no way that that is a superpower. And you probably just did not hit yourself hard enough.[Again, added sophisticated-ness. I am also pretty sure this was an offer to punch me. I almost accepted]

Me: I hit myself plenty hard. My right leg has the most scars, and my left the most bruises. I am like, the least symmetrical person on the planet. And yes, I know that is not a superpower, I am not insane.

Jenna: *coughs* sure.....

Also, if you have never woken up to your adorable rabbit licking your nose, you have not lived. Charlie licked my face until I woke up this morning and then she cuddled with me for about an hour. Bunnies. Are. Awesome.
If you dont like rabbits, you should meet mine. I didnt like rabbits until I met Charlilly!
[Except all white ones. Those scare the life out of me. Seriously. Im pretty sure they eat flesh. Just saying.]

Wednesday, February 12, 2014

I dont even know what to title this

       At the moment, I am sitting in a chair annoyed because I have a freakish amount of pent up energy that I cant do anything about. (I would start bouncing up and down in my chair, but then I will get a bigger headache and/or panic attack.)My legs have been really weak lately, and four days ago began to be unable to support my weight. (Though in my legs's* defense, 175lbs is probably not easy to keep upright when they are filled with Lyme bacteria. Or at all.)**

*Seriously, is there a possessive plural for the word leg?? Because if its not "legs's" I dont know what it is.
**this paragraph has nothing to do with this whole thing except for the leg part which is important

   It hit me yesterday that I will never know what it is like to have a normal childhood. I mean, I will be 18 in May and I barely ever leave the house.
Not cause I don't want to (which sometimes is the case because I am slightly terrified of people) but because I honestly have a hard time getting out of bed. Even writing about this, I am having a hard time not wallowing in self pity.

[Please note, I try very hard to not wallow in pity. Not only is it selfish, but wallowing is a fairly gross and muddy thing to do. Unless you are a pig in mud, then I am sure its fabulous]
But the more I pretend to people I am alright, the harder it is to stay happy. I spend so much energy smiling and being chipper and trying to make it look like I am okay, that I end up sobbing and sleeping for hours.

  I get so frustrated with people for thinking I am not really sick, or that I am exaggerating. A guy at church (we will call him Sted [I couldn't decide between Steve or Fred] ) always asks me how I am. 

Sted: Good morning Rowan. Are you feeling better then you were last week?

Me: Nope! How are you?
[This is my customary response. I say nope, with a smile and then finish with "But I'm still standing" -which is funny cause right now I can't actually stand-]

Sted: Nooooopeee 

When he says "nooope" he laughes, pinches my cheeks and then pats my shoulder like it is some inside joke between us. 

I was really really bothered by this; but then I realized something.

 If I keep pretending to everyone like I am okay, never letting anyone see past my shield, Its not their fault that they don't think I am being serious. I can't get mad at people for seeing a healthy looking girl who is always smiling and saying she is fine and shrugging things off and assuming she is indeed fine.

In a way, I have been lying to myself. By pretending to everyone that I am okay, I delude myself into a horrid line of thinking.
 That Maybe if I pretend that I am okay, it will all just disappear and I will be healthy again.  
And that is probably why I have been getting so many panic attacks and mental breakdowns.
 A person is not meant to hide who they are from everyone around them. {Unless you are a spy.)

 Yeah, by letting on about how bad off I am I might lose a few friends. But that is okay becase honestly? I don't know that I would want to deal with me if I was in their place. But in the long run, I would lose more friends by pretending I am okay, and resent them for believing me.

  It was a broken kind of logic anyway. One that came back to bite me in the butt. I have lost the ability to walk much and I have to literally drag myself up stairs.  I have spent all these years acting like I am fine, and now I can't hide it anymore.(It is tragically ironic though that I can't walk or stand because I have been saying "Hey, Im standing" instead of saying I'm fine.)

    As I write this, I realized something. Part of the reason I am cried myself to sleep about being unable to walk [granted a small part, but a part none the less] was because I am vain.

 I was too vain to want people to see how ill I am. 
Honestly, this not walking thing is one of the lesser problems that I have. 
But it is one of the only visible ones. 

People can't see my inner panic attacks, or my depression.
They can't see any of the long list of things that hurt all over my body. 
They don't know that when I mess up a sentence, its because I can't figure out what word I meant.
Or that I am quiet because I honest to goodness can not manage to form a legitimate sentence.

But having to use crutches and wince in pain while going up stairs and having my legs buckle under me? That is terrifyingly noticeable. 
Having to ask people for help scares me. And that needs to change.

Tuesday, January 21, 2014

Its a love/hate relationship.

Fashion. You have probably heard that word. Sometimes uttered in disgust, sometimes in sheer delight. However, fashion sometimes is not always so simple as it seems.  I believe that it differs greatly depending on the person considering it.

Modern, Chic, Retro, Vintage, Grunge, Drab, Classic. All words that mean one thing…fashion! Fashion does not have to be all runway glitz and glamour. It can be as simple as spending those extra five minutes (Okay lets be honest, 10 minutes) to find your lucky tights, get that last strand of hair right, and clasp on a necklace. Fashion can be meant to stand out from the crowd or blend in with style.

            My sense of fashion is what most call eclectic. I will readily admit sometimes it looks amazing and sometimes it’s a major fashion fail! But hey, if you don’t try it how will you know? Some people say you cannot wear a corset anymore, but others are incorporating it more and more into their clothing. Just the other day I wore a A-line red short sleeved dress with a black silver clasped corset over top! Toss on some chic silver bling and a pair of black heals and bam, your very own fashion show. We all have those moments in our bedrooms where we try on random outfits that we would never show anyone! Don’t be afraid to experiment with your closet. (No one has to know you tried a blouse, skirt, and toe socks.)

            Long rant short, don’t be afraid of fashion! If you are into going to fashion shows and trying out every style, that is awesome. If you are into checking out peoples outfits while out and about and silently criticizing the mannequins in shop windows, that’s cool too! Both are fashion! And even if you are the most fashion conscious person in the world, we all have our “comfy clothes” that we don’t want anyone to see.  Perhaps its not quite glamorous, but not everything has to be. As long as you don’t end up on “People Of Walmart” you are fine!