A Couple Monkeys Off My Back. Letting Them Loose In A Court Room

I'm not a sensitive person. I don't like people knowing my business. I may share some stuff. Only a very tiny glimpse of the whole picture. Enough to shut you up, and keep you from asking, and so that I don't look like a cold hearted bitch. Some may find this odd that this comes difficult to me. As talking of sex, child birth, and poop come so easy. Well you see when I talk about those things you are left in shock so you forget to ask about the everyday stuff. I do that for a reason. I don't like YOU knowing. I don't like talking about it. I don't like people to know I struggle. That I struggle financially, health wise, and most of all emotionally at times.

I do struggle. Man do I struggle. Those very close to me know this. Only a very few I let into my Secret Bubble. They know me well enough that I don't have to tell them every thing . They see it. They add 2, and 2 together, She used to do that. She doesn't now. She can't. It must be hard. They know that if it could or should be done, and if I could do it I would. I have a few (very few) precious friends, and a husband that can read me well. They don't get caught up in the whole "you don't look sick thing". They  just look at the hell I have been through the past few years.

Most of all for me it's very hard putting my emotions out there. All in the open. For everyone. I can, and will tell you all day long what EDS, POTS, and all the other illnesses have done to my body. They make me feel like this. When I talk about how I feel I often refer to it in a physical sense. Not emotional. I can go on, and on how these conditions have tore my body up. How they cause my pain. Cause my nausea etc; etc; etc;

It's very hard for me to say these illnesses have caused me sadness. They have caused me pain. Not the pain in a physical sense. They have caused me anger (anger comes pretty easy lol), grief, and a deep sense of loss. They at times cause me depression, and make me feel like less of a person. Make me feel of a burden to my husband. I went from being the strong one all the time to being the one who needs cared for some of the time. I went from having a job where I got to please lots of people all day long, and was paid to do so. To fighting for what was mine. My SSI Benefits I worked so hard to pay in. When you take away my income I felt so worthless. I hate not being able to help pay the bills. It pisses me off! It saddens me I can't work. I miss the people. The socialization.

I miss wearing shoes with shoes laces. Shirts with buttons, and pants with zippers. I don't wear these kinds of clothes because they are hard for me. The shoes....I don't bend over. Bending over can cause me to pass out in a New York minute. The buttons are difficult when my hands are numb from neuropathy, and or swollen from joint pain.

I talked about how my kitchen is accommodated to me. I hardly chop vegetables. I used a food processor. When I do chop I have extra light knives, and a tiny light cutting board. I use plastic dishes, and cups for they are lighter. A wooden rolling pin. Marble one is too heavy. I told them of the Godsend Kitchen Aid my sister bought me. How I can dump, and mix. That I can make cookies, and bread again! Things I couldn't do before. My hands can't mix/knead that thick stuff. I cook, and prepare food allot sitting down.

How I shower at night because it wears me out so bad so I can just go to bed afterwards.

There was much more..........if I told you everything you would get bored.......another post another day......

The attorney said things went "really well", and that I did, an "amazing job!"
Now to wait.............

What It's Like Living In A Body That Is Shorting Out

Your central nervous system consists of the brain, spinal cord, and retina. I love mechanical things, and know my way around car engines so I like to often refer to my body as being similar to a car. Sure I'm not as shiny, and I talk way more, but the human body, and a automobile really are similar. We both can malfunction. Both require fuel to run. We both need water. We both release stinky stuff from the rear. Both our exhaust stinks, and can be harmful to others. We both have to have water to run. Some are cold blooded. Some require speed. Some can go for miles, and miles living a long life with no 'mechanical' problems. We both come in all colors, shapes, and sizes. Some are fast like us. Some are slow, and trusty. Some haul loads of unnecessary junk in the inside. Some stink. Some make life easier, and some feel like a curse. We both over a lifetime cost a ton of money. Some require little money to maintain. Others are high maintenance. Some are a great fit within a family. Others family is unheard of. Their is a one for everyone. Some have cute nicknames. Some get called POS, and stupid by their loved ones. Some require special fluids to keep them going. Some have to have very expensive fuel to even run at all. Both have a wide choice of medicines to fix aliments, at all different cost levels. Both require a knowing professional to fix us when we are broken. Give us the wrong professional, and things don't get fixed properly......it takes 3 or MORE professional to get us on the right track.

So that being said. How does it feel to live in my body that shorts out like a POS car? Some days it pisses me off. Some days it's amusing. Other days it down right annoying, and gets in my way of doing things. Some days it's fun, and challenging. Sometimes it gets me attention. Sometimes I want it. Sometimes I don't. Either way I choose not to hide. I'm not so lovely that I need to park in the last row of the parking lot to escape a scratch. Yet I'm in okay shape that you don't want scratches, and dents for the whole world to see. If I polish my self up I feel better. I can always change my coverings to fit a certain mood. If you kick me I jiggle like a low tire. I cost allot to insure. Some days I'm full of spark, and other days I barely run. When it rains my coils get wet, and I'm not  good for anything. When my coils get to hot freaking forget it. Once I stop, and am silent forget about me going anywhere. Until I left alone to cool off.

Think of when wires short out. All kinds of odd things happen. Things that shouldn't happen. I had a van once the electric seats would move on their own, the windows wouldn't roll down. The heater blower motor would just turn off for minutes then mysteriously come back on. The headlights would flicker. The windshield wipers switched speeds on their own. Sometimes the gas gauge worked. Sometimes it didn't. I had a major short. The van pissed my husband, and I both off. We didn't have the patience to diagnose, and treat every little problem. It had to many 'little' problems that made it as a whole a BIG problem. So we sold it. I sold it to my very patient friend. He fixed everything, and what do you know? That van became their band van. It went all over hell, and back. For like 5 years, and thousands of miles. The same van I just knew needed a salvage yard.

Living in my body is about the same. When things short out in my neurological system all kinds of things happen. After all it controls everything! So I have hundreds of muscle spams a day. If I move a certain way my muscles will knot up, and I can't more for a few seconds. Sometimes I see spots. My ears ring. My eyes have been known to move back, and forth on their own. The pupils being different sizes. Sometimes I itch for no reason. I can smell things that really don't exist. Or see things that don't exist. Sometimes I can't smell at all. I will get goose bumps when it's 90 outside. My head can be burning up, and my feet ice cold. Some days I hear okay, other days I have a hard time hearing. Sometimes I shake or twitch. Some days I can do things of fine detail. The next day it's hard to hold a fork, and get food in my mouth. At times I'm numb, and don't feel things burning me, or cutting me. If I stand up I have to pee. No matter if I just did 5 minutes ago. I feel like I can't swallow when I can. Sometimes I feel like there is an elephant sitting on my chest. My blood pressure does what it wants, when it wants.

This happens because my neurological system is malfunctioning. It makes my life interesting to say  the least. This is just how I'm. It's not whether something will short out. It where, and what? Some professionals help me, and some make me worse. All in all I'm a temperamental being. So you will never figure me out. Just deal with me as I'm. This is just how I run. I never claimed to be of fine German engineering. Just bottom line American economy class that requires lots of upkeep, and PATIENCE.

At least I'm bought, and paid for! Just ask my husband, and Father in Law about that. So enjoy your ride like it's the only one you have. You are not guaranteed to be able to drive forever.

Let's get started!

I wanted to start a blog for a long time. So finally here it goes!
EDS sucks. POTS sucks. Chronic illness sucks. One thing I refuse to let this illness take away is my sense of humor, and my strength. Without the two I would go mad, and be more ill. I promise I will not bring you a blog of only medical advice, and facts. There are enough of that on the web. What I will give you is funny, but with a real window into the life of what it’s like into MY world. I can’t promise I won’t get a little poetic from time to time. A lot of people know me, but don’t KNOW me. They don’t know about what I go through on a day to day basis. That’s why I started this blog, that, and I need a positive hobby. Mostly people need to see what I go through. I however don’t need nor want pity. I don’t even pity myself. I get my ass up almost everyday, and deal with it. Some days better than others......
I just want people to understand how hard it is. What my kids go through. What my husband goes through. Chronic illness doesn’t only effect the patient. It is hard on the whole family. I keep my sense of humor through it all, and I hope to help you keep one too. Humor, and happiness helps with the pain. It helps us move through the days easier. Plus well when life just sucks it’s easier to just go down laughing.........Hope you enjoy!