Friday, December 5, 2014
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
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
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 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
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.
Thursday, February 13, 2014
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
*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]