New Place. New Adventure.

 

My boy and I moved me to my parent house. They have the best doctors around. Joe helped me set up my room. Willow isn't peeing in her box. I need a wireless receiver to play games with him. He's gone. I'm alone.

I took him to my secret spot. It was hard getting there in my Walker. But we made a fairy house and swing. I

Stuffed Animal Army

Had a very bad seizure that woke me from a dead sleep. Joe, my boy, woke up in time to catch the second one on video.

I'm moving in with my parents till we get this settled. But who will keep video record of these things while I'm away? Who will hold me through the aftershocks? 

Looks like I'm going to have to set up a light and video camera system to capture these tremors and depend on my stuffed animal army for after spaz care. 

Since now I can't sleep I'm going to pack those stuffed animals.

I'm talking to people about helping me make an off roading walker for walking trails. Any ideas are appreciated. 

Losing control

Because of my problems  being forced to drop out of school for the semester, and move back in with my parents. That means I have to leave my friends and this amazing life I've built here. I have to give up all of my adult control to live under my parents roof and have them go back to treating me like s baby. I'm not. I'm nearly 30. Mom and dad expect me to be cool with this 

I'm not. Control is badass. Being pushed around like a baby is not. So I rebelled last night. I had my girl friends over and we diedy hair!

I also got a walker. My coming days will be spent tricking it out too!

Adventures in hospital

I went to the hospital and spent the night. Things are looking really bleak. They don't know what's wrong with me. But I can bearly walk anymore. I'm flailing like an electrocuted fish. I'm sure if it weren't so painful it would be entertaining. 

But that means I'm getting a walker. Mom is giving it to me so although things are bleak, I'm looking forward to pimping out my walker. I was looking online and apparently all the walker toys are for the old at heart. Sorry folks, I have the body of a 28 year old and the mind of a12 year old. My walker is gonna be fucking BEAST! 

I'll need a seat. Cup holder, cell holder, storage container, and a bike bell. I'm goingyosandit down, Do a base coat, andhave my friends overto help me decorate it. Im going to use nail polish and modeling paint. I'll give instructions for my friends who are faraway to contribute to the decor. I'm looking up other things tat would be cool. Perhaps a sun/rain cover that collapses ...any ideas ? 

Anyway, my boy just got his wisdom teeth removed. Granny has been in and out of the hospital for some problems. My kid brother hurt his back... Things Are pretty strained at our house. Prayers are welcomed. I'm providing pictures in the meantime.

Angry is Badass, Right?

I am so done with this sick. It's been more than a few weeks and it's getting in the way of my life in a substantial way. I am so angry about it tright now. I just want to know what I have so I can 1) go about fixing it, or 2) start making arrangements. This weekend I spent a lot of time out and about. Only a few hours here and there, but still a lot. I spent so much time being distracted by my twitching and hurts I couldn't focus enough on having fun. I mean, sure, I did have fun...the most fun I've had in a long time, but I was still sufficiently distracted.

Homework is like pulling teeth. I have no reading comprehension, and my writing skills have retired and moved to Cuba to start a brothel and didn't invite me. I have to resort to reading aloud to retain anything right now. I'm a novel-a-day kind of girl. This is infuriating. I want to rip pages out of my books then burn them. Because it's hard to read, it is also hard to edit my papers. I know the grammar and spelling mistakes are there, I just can't identify them! Typing is hard too! What it doesn't hurt, the spasms make me hit the wrong keys and I feel like flinging the keyboard across the room.

I am angry and frustrated more than depressed and scared right now. I just want answers so that I can move out of limbo and back into the real world.

Today I have to read 20 or so pages, write 2 pages about what I read, write a lesson plan, and post a picture journal entry.

Seriously though: humor is going to get me through this.

If I have mad-cow I want to start a mooing choir in downtown.
If I have Huntington's, I'm going to walk around with "musical music" and incorporate my spasms into a dance to the music.
If I have MS...well I don't have anything entertaining for MS, but you get the idea.

I'm sick of this. Hopefully I'll get an appointment soon.



(If there are any ideas for humorous responces to nurological disorders, please leave them in the comments)

Staring Down Pride

I went on a date today. I was having a good health day! My spasms had been low key, only a small headache, and after my nap I was solid on energy.

My boy took us to dinner. Greek food is the best! Then we went to Barnes and Nobles to read comics and drink barista drinks. I had a hot cocoa. It was probably a bad idea because my left side is non functional from the spasms, and my joints may be killing me.

I faced my daemons though. I took on my pride and told it to fuck off. I had my spasms in public and pretended like I didn't feel stupid as fuck. 

Had a hard time reading the comics too. ADD without adderal compounded by whatever issue I've been having dragged me back. I can normally eat a trade comic in an hour. I was only half finished by the time we left.

But, I have to say, I'm really liking the New 52 revamp of DC comics. The Teen Titans are especially entertaining for me. Also, I may have a new favorite character: Danny the Street. He's a sentient street that is a transvestite and wonders the world bringing happiness to those who need it. How badass is that!? 

Tomorrow I go to a beer festival. Another public outing. Wish me luck.

Life Inventions and Embarasment

My life has become a steady stream of adaptations. I wake up, and make myself some herbal tea. I used to drink coffee, but a few weeks ago my doctor said no more stimulants. My tea collection is now more impressive than it's ever been. 

And yes, that is a Wonder Woman mug. It's my favorite!

I then take my morning vitamins because aside from alieve I have no pain killers or anything for my symptoms. So, I've improvised! I take 7 vitamins and alieve. It cuts the pain for a bit.

If I got enough sleep, I might feel enough energy to do some chores, but it normally doesn't last more than an hour. No matter what, though I have to feed the cats.

I then lay down on the couch and watch tv. I might take a nap later. Hopefully at that point I'll have the energy to make myself lunch, take more vitamins  and do homework.

More laying around happens. And eventually I heat up some dinner and take more vitamins. When I'm ready for bed I'll take a melitonin and pray for a good night sleep.

I'm hoping that I'll get an apointment with the nurologist soon. 

My dear friends came over yesterday. I was having spasms. It was aweful! I don't want people to see me like this. It's one thing to hear it's happening. It's another to see it. It's the same reason I loathe going to class.

How do I turn this into a badass learning experiance?

I also find it amusing that until this point in my life, the running theme of my life had been man v man, or man v society. The current running theme is man against himself. So the conflict in my story is I have to fight my body to have a good life. Maybe that's the way to overcome this... Maybe I have to look at myself as though I'm writing a book about me. 

I hope this isn't a forever problem. 

Owning The Pain

So the pain and spasm/tremors/seizures are right pissing me off. Today I down loaded two apps to help me collect data for the doctor. I got a seizure recorder and a pain recorder. We'll see how it works. Trying to stay proactive. I am so tired.

I skipped reading homework today. I can't focus and I'm tired beyond all reason. I have to go to class to tonight though. My teacher is anal. I only get one absence. If I need hospitalization at any point I need to save it. That means explaining it to the teacher. Ugh. In my mind, the fewer people who know about this, the better.

Good news though. I have a cat in my lap, and a cat on my chest! So warm and snugly.

It's Never Lupus

Good News!

I went to the doctor today, and I got the word! I'm free and clear on the Lupus front!

Unfortunatly my muscle spasms/ tremors/ seizures are getting worse, and the pain is hard to take on the best of days. They are referring me to a neurologist where I will undergo all sorts of tests to figure out why this is happening. That's honestly not what bothers me. I can deal with tests. I can even deal with the results. Seriously, though...this is really effecting my life. I can't work. I'm having a hard time in school. Driving places is scary so I'm stuck at home. All this and I have to wait a week to even talk to a doctor to schedule an appointment. I just want them to put me in a room, run a whole bunch of tests, figure out whats wrong, and treat it.

The doctor said to use Alieve for the pain. I have to say, it did a lot better job than all my other pain killers! Unfortunately it only dulled the pain making it tolerable and not teeth grinding, and didn't last 12 hours. It lasted 6-7. All well...Best pain killer so far.

So I've decided if I can't get the doctors to help in a timely manor...I'll do my best at self medication

Symptoms                                                                     Treatment
Joint/muscle pain                                                           Alieve every 8 hours.
Chronic Fatigue                                                             Vitamin cocktail (Ginko, Ginsing, and Vit D)
Nausea                                                                           Ginger gum/tea
Migraines                                                BC powder Backache (basically Excedrin minus the caffeine)
Lack of sleep                                                                   Sleeping pills
Lack of concentration/focus                                           Vitamin cocktail


That's all I've got. But seriously, I'm sick of being passive. I have to do something or it'll kill me. I need to work. I need to be able to do school. My house is a sty and I need to clean! I can't let this shit keep me down. I need to keep going in a direction, any direction, or I'll stagnate. I'll become a blob not worthy of life!

Pro-activeness is a sign of badassitude. Lets get going, then!

Because Colors

After a particularly bad emotional state, I decided my world needed more colors. This is what I made!

Facing Illness: An Exercise in Fear

I've been sick recently. I'm not dieing, I don't think, but it's painful and awful none-the-less. My mother has a chronic disease called Lupus. After more than a few months of dealing with Lupus like symptoms, I went in for a blood test. I find out in a few weeks if I have it.

Honestly, I'm scared. I would rather it be cancer than Lupus. With cancer you either die painfully or live painfully for a couple years before getting better. Lupus isn't like that. You live the entire span of your life taking pills in the double digits, and still you deal with constant pain, fatigue, and ass tons of other scary symptoms. And then there are the side effects the pills give. I've seen my mother fight against loosing herself to the disease. It's a constant struggle for her.

I didn't sleep well last night. My legs ached so badly, and I couldn't find a position to make the pain abate the slightest. This is a common thing for me now-a-days. It's been months since I had a full restful night sleep.

Today, I'm finding it painful to type. My hand hurts with every stroke of the keys, and my shoulder is constantly in pain. My knee has a sharp achy pain.

I know that around 2 I'm going to hit my limit of what I can do today. I'm going to become so exhausted my body just wont work.

I'm very scared because I might have lupus. I don't know for certain, yet, but the possibility is there.

There aren't many who know what's going on. I can count on one hand. I'm afraid I'll lose friendships. I'm afraid I'll lose my boyfriend. I'm afraid I'll lose my job before I even get it.

I have a friend. She is very "Mind over matter." I'm afraid she'll not understand and tell me to toughen up when I'm doing the best I can. The thing is...she's my best friend. I don't think I could live with her constantly telling me to suck it up.

My boyfriend is so understanding. I love him, and he loves me, but how much of this can he really put up with? Could he really take the changes that this would bring to our relationship?

If I have Lupus, I don't think I'll be able to teach. This hurts REALLY bad. I've been working so hard, but people don't care about effort. They want results. Teaching is hard enough for a healthy person. The first few years are especially hard. With Lupus, I'd have less energy, and more pain than a healthy teacher by a LONG shot. In short, I would not survive my first year teaching. I'd probably have to give up that dream.

Then there would be the constant doctors appointments...the strain on financial resources...

Honestly, there's no point in living at that point. I'd constantly be in pain. I'd constantly be exhausted. I'd have lost friends and lovers. Most of all I'd have lost my future. I don't thing I could bear that kind of heart ache.

The diagnosis isn't in. It could be Lyme disease. It could be a vitamin deficiency. It could be anything...but my worst fear is that it's lupus. I would rather have cancer than lupus.

I keep trying to figure out a way that I could flip this into something good and positive. The only thing I can really do is wait, and be strong. Even if I'm afraid I need to soldier on because life isn't gonna hand me a free pass because I got sick. Come what may, I'll carry on because that's all there is.