A 1 Handed Biotch Again Strokes Are No Fun

As some of you know I suffered from a stroke last summer. After many months of grueling PT, and OT. I fully recovered. It was hard, and at times I was not sure I could do it. Well I did. I had to. To many things required two hands. Plus walking with a walker in your 30's is not my ideal of fun times. I worked from a walker to a cane to eventually nothing. Not without allot of self doubt, physical anguish, and family drama.

Somehow I made a full recovery.

Last night what started out as chest pain ended in another stroke. This makes my second one. At one point I thought it was 2002, and Bush was president. My face had severe droop, and my speech was slurred. Left arm, and leg useless. I had no idea how I was going to get downstairs to the car? An ambulance would wake my kids. Kid see a ambulance, and think someone is dying. So no meat wagon. Down on my ass I went. Hubby held the useless arm, and leg. Not before getting mad, crying a little screaming, saying lots profanity though. Only then I went down those steps left side numb one at a time. I had to harness my anger. I had to use the embarrassment of my neighbors gawking at me of an ambulance hauling out of my apartment. Also the fear my kids would have had seeing their Mama getting hauled away in an ambulance while they just kissed her good night a few hours prior.So down I went. On my ass. 1-2-3. Thump. Thump. Thump.

This is hard to do with children, and happen to have five at home. They need Mama. Mama to cook, Mama to clean, and her to just be herself. They don't understand when things change so drastically. They just want dinner, and they want it now! So when Mama can't make a meal for herself let alone six other people they are left confused. The oldest two have to fill shoes that teenage girls shouldn't have to. That breaks my heart. They shouldn't have to take care of their little brothers, cook, clean, run the errands, and still go to school. They are kids too. The little ones are worried, and make me get well cards, and told all their teachers. Burdens little hearts shouldn't have to carry.

My hubby is left to watch is wife suffer. So he too suffers. He is so consumed with worry it effects him just as much. Then the stress of making sure kids are taken care of, missing work, phone calls, and taking care of me. When things like this happen he refuses to leave my sight. This illness by far doesn't just effect me it effects him too. Who is here for him? He is kinda left hanging my crap shoot rope. When things like this happen he is stuck holding one giant rope each time. So many things piled on him. So I watch him on this vicious  cycle climbed up, and  climb down. Sadly there really is not many people here for him! Who is here to pat his back, and tell him everything will be okay? When I'm off in Lala Land thinking 2002. I have watched him go without sleep, food, clean clothes, and moral support each time I'm in the hospital. Sometimes he won't eat simply because he will not leave my side to go get food. Other times he doesn't eat because he has no money to eat. We always have lots of food at home. But that is at home, and how to go get it?

It breaks my heart to watch this! To watch him pace the floor. To tap his feet while sitting with anxiety. He is worried. Who is here to sit with me so he feel comfortable to go home for awhile, and visit his 5 kids? Maybe get a shower? A bite to eat? You would had thought he won the lottery when our daughter surprised him one day with a Whooper from Burger King. Then when he gets home he has more worry. The financial worry of missing work. The fear of leaving his wife while he leaves to drive over the road. How will I get to PT, OT? Last time I went 4-6 times a week. He doesn't handle stress well, and he doesn't like change. I kind of changed his whole world in one night.


This hurts me to the core..........

My illness effects this whole family, and that I dislike. He says he never gets tired of taking care of me, and I believe him. Yet I still fill horrible!

In the end it's always the same, hubby, and I work through chaos. I understand everyone is to busy to help. People have things to do I get that. Well I'm busy too. Building a strong marriage. Working on getting better, and raising humble kids. Whom I can only hope continue to stick together, and help one another like they do now. After they are all grown, and leave my house. That when they have grand babies they will desire to care for them when their parents cannot. That in a true family emergency they are never to busy for one another. They will help one another out. In an emergency this Mama, and eventually when I'm a Grandmama is never to busy. Complicated to help? Maybe, but I would do it. I care for my kids now at times of pain. I just suck it up, and do it. I can dream right?

Well I guess this is round two. Here I go. I know I will have lots work to do. Here is to nothing. Here is to hard work. I know I can do this, and I will. I will fight like hell until there is no fight left in me. Because I don't have time for this shit!

****puts on her big girl panties****

To Love Is To Love In Times Of Shit. Not Just Glory.

When you love. Love hard. Love all the time. Don't just love me when I'm happy. When I'm pretty. Thin. Looking good, hair done, and my make up is on. My clothes match. When I feel good. When something good had happened. When I have money. When my house is clean, and I cook a good meal. When my dog is being a good girl. When my cat shits in it's box.

Don't just love me when my kids say something cool. When they do something good. When I post a cute little pic on FB. When they get good grades. Or because I got a daughter who is brave, and going to be a Marine. Or when I tell you I took another sweet girl in who needed a home. Not just when one of the kids gets an injury, or is sick. When they do something that gets then recognized at school.

 Love me when I have the shits, and I have The Ring Of Fire. When I'm hungry, and don't know what I want. When I puke up everything so I want food, but I'm scared to eat. When I'm a dumb ass, and eat foods that give me migraines. Then suffer in pain all the next day. Love me when I'm pist off that doctors don't understand me! When I'm pist off my medications cost so much. When I can't find a doctor to treat me period! Love me when I'm to sick to play with my kids. To sick to cook a good meal. Or clean my house. Love me when I'm to sick to hangout with my sister. Love me when I'm pist off for no reason. Love me when I'm grumpy because the pain is unbearable! When my knee hurts so bad, and is dislocating so I can't even leave my upstairs apartment. Love me when I have a stroke, and need help to the toilet to take a shit. Love me when I have a Hemiplegic Migraine, and need someone to push me in the wheelchair. When I'm having one of my sucky days that fall into my list of restrictions that I can't drive. Come haul my ass around. Love me when I just need a Friend. When I need an ear to bitch on the phone. When I need some decorating advice. Clothing advice. Love me when my husband is gone over the road, and I'm lonely!

Love is love. It loves all the time. If you love me you love me all the time. Not when it's convenient. Not when you have time. Not when I'm at my best. I have a chronic illness. I wake up not knowing what each day will bring. Love knows no strings. You can't pick which parts you love, and ignore the rest. So love all of me. I never said I wouldn't piss you off. Or you me. But don't just love me for the sake of the public eye. PLEASE don't just love me on FB. Or because you think you have to. Who cares what people think! I DON'T!!!! Love me for all the right reasons. Not the parts you think you can pick. If you don't love me that's fine.........................Walk away!

My illness has effected my memory in many ways, but one area of my memory that still serves me well is my emotional memory. It's like an old school Rolodex. I can flip back to a time you did what, and when to hurt me. Sure it's like that Pink Floyd song. Another Brick In The Wall. "All in all you where all just bricks in the wall" That is how I feel. The hurt people have done I have created an emotional wall around my heart. You want inside be real! Not fake! Be here all the time, not part of it! In fact make time for me!

Only then will you be allowed inside my Secret Bubble.

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.............

Driving With Chronic Illness

Driving is something many take for granted. It something from about 12 we look forward to do. Then one day we are finally old enough to get our license, and we are the happiest teen on the planet. When I was a teen running errands for my dad fetching auto parts, and paint where cool. To him it was one less thing he had to do. I just wanted to drive I didn't care what? How? When?

You fast forward to the now so many years later. It's not so much different. I don't care what I drive. How I drive it, and when I do it. Why is this? Well when you have had it in front of your face twice that your driving days are limited.....well you just are happy to go. Just as when you where a happy carefree teen.

The first time I fainted behind the wheel, and had an accident. With my then under 2 year old son in the back. Scared the hell out of me. Not to mention quilt. The I could haves? The what ifs? So on, and so on. That time I was ordered not to drive until my spells where resolved. Even after that I was told to not drive more than 15 miles from home. Mind you that is hard. With kids, and things to do. I felt so helpless. So much like a bum. I had lost my will to et better at that point because I had a husband that on the weekends wanted to go go go. Go on these road trips, and "boony cruises". Even more so to remind me what a failure I was. That I had to be given a ride everywhere. To the dr, the store. EVERYWHERE.

This wasn't easy on a husband who drives for a living. He doesn't always want to drive all night when he gets home. So even though he did it, and allot of times he meant well it wasn’t without complaining. Which made me feel even more terrible. I had told my self I needed to get better so I could drive again, but found myself getting more depressed. Having to rely on others. Then finally as the dr said I could drive again, and I was ready to go back to work some I quickly figured ways to cope. Driving was still hard. It would get worse as time went on. Yet I want to keep hanging on....

Most of all it's independence don’t have much of that left these days. No job. Kids getting older. They don't need me as much. No hobbies really to speak of. Nothing really that I do I get to say I accomplished something anymore. Then you mix all this in with the fact of lack of options. Who else will do it? Haul the kids around? Me around?

You fast forward a few more years, and I have a stroke. While driving down the interstate. Couldn't drive a while again. Truthfully dr never told me I could again. He said he would reevaluate me after therapy, and he never would say really. I just do. No one else to, independent thing, and hubby gets sick of doing it all.

So here goes that worthless feeling again. Only this time the worthless monster brings ne challenges. When I pass allot of traffic if it's sunny it looks like a strobe like sort of. Well that freaks my brain out. Causes me to get chest pains, and a migraine. I hear weird noises they scare me cars driving by to fast or to loud. My brain never did recoop from that from the stroke. So in a car with no ac. This is a picnic I tell you what. I'm very sun sensitive. Even if there are clouds out. If I don't have sunglasses on I start to see floaters, and hazzy vision. Sometimes when I get Migraine Aura I smell things that don't really exist. It's usually burnt rubber is most common. Next are ammonia (cat pee), and gas. So think of the fun when you think you smell a burning hose, and gas? Could be real could not be. My brain doesn't know the 2. So that freaks me out.

Then there is my vision problems since childhood only made worse by EDS. I struggle with both distance, and up close vision as I have as astigmatism. At night headlights look like cauliflower buts yet burn. I can't tell if cars are in the left or right lane when it's dark, and they have their headlights on. I can't tell how fast cars are coming up on me at dark. So I don't for sure know how fr they are away. So I get honked at stop lights, and signs allot. "GOOOOOOO". This makes my hubby furious.

Yet I'm scared to wreck. AGAIN. Scared to not be able to drive. My Fu$%ing brain is shorting out. Right now I have terrible ringing in one ear, and whoosing in the other. Then there is the who will take my kids here, and there. Who will take me to, and from where I need to go?

It just sucks! Yet it's so hard. I would be way easier to just forget it, and hang up the keys?

Then what is there to make me worth while? I just want to feel like me again. The women that people want to get to know. I want people to be proud of me. I want me to be proud of me.

The Fire Hole, EDS, and POTS

You have heard me say how challenging it can be living with a chronic illness. If you have a chronic illness yourself you know how it is. You throw in something like a stomach virus, and I get hit with a freaking blizzard. Holy Crap Batman. My oldest 2 woke up puking, and also the 7 year old. I thought okay. They all stayed home from school. They had stuff coming from both ends. I ran to the store to get some meds, and making for homemade Chicken Noodle Soup.

I thought 'man I hope I don't get this!' I go about my day. A couple hours later the hubby, and I are in a thrift store, and it hit. My guts started grumbling, and growling. Then there was the I have to fart, but I'm scared to. I might poop myself fear. So I ran to find a restroom. Oh Dude they better have one! They did whew, ans let the fire hole begin. They didn't even have soap. Ewwwwww! I have these little portable soap sheets in my purse for such occasions. Go figure my shoulder was giving me fits so I ditched my 10lb  pharmacy, and emergency surplus at home. Damn must wash properly when I get home! At least they had decent TP. On a real roll. Not the giant roll of you can never get enough 1 ply. Then off to get my son. I hope that doesn't hit on my way home in the car! Guess I do have this virus? Damn Fire Hole.

Then a song came into my head. The massive Green Apple Splatters, and I wanna sing? How does that work?

Great. Just great. A virus on top of my normal sick. Double suck. Triple suck. Suck to the infinity. It's never simple with me. It's never just take Pepto, and it's done. NOOOOOO! There is always can you take that with that? Can I eat that because of my migraines? Does that have lactose in it? Does this react with my other meds? Am I allergic to that? Will it cause tachycardia? Drowsiness? Hype me up when it shouldn't. Never just as easy as shit ten times a day folks. Nope. Never. Okay. At least I buy good TP, and have soap!

It's Been Awhile. I Play Like It Don't Exist It Doesn't Right?

It's been awhile since I have wrote a blog. I have been in a rough spot. Not much to say. Oh well I have had allot to say. Just not allot to write. Or the know how to write it on paper, or screen. I guess the point of the blog is to blog the suck, and reality of my life right? All the ups, and downs. I have to ask myself. Am I really ready for that? To put myself out there as such? To have all my business out there? Doing so would let people into my brain, my emotions, and they would know that I'm not always a tough girl. I don't know if I like that or not? When I'm in my non tough girl mode I prefer to hide. To not let others see. I don't like weakness. I don't want other to know my weaknesses. Yet weakness makes us human. Normal.

This illness really takes a toll on me sometimes. It takes a toll on my family sometimes. If people only knew what it was like. Yet you will never know you are not me. I would never ask to take it back or change my life. Nope. Just makes my life so very complicated. However I don't like what this illness does to my family. They shouldn't have to worry about me. My husband should not have to spend his days at work worrying if I'm okay. I was always the strong one. The one that got shit done. I took names, and asked questions later. Now I do good to remember my kids names. 

I don't like the fact in my extended family my illnesses is just something we don't talk about. Kinda like when someone gets the clap, or  crabs. You know they got it, and it sucks. You want  to know the how, the when, and they where? Yet it's like a train wreck. You want to know. To see, but you are to grossed out to look. To ask. That is how I feel most of the time. I feel I have to be fake. I have to play "well" in front of most of them. I'm not allowed to be unwell. Maybe its because I was always so hyper, and full of energy before? I don't know? So it has caused me (and my family) to be very distant from allot of people. They just don't get it. They don't get what I go through. They don't try. Nor do they see what my husband go through. Or my kids. I'm not unique in my story. I can tell you many the same as mine. It happens often in chronic illness. Especially in Invisible Illness. You see because I'm not walking around tinged green, with oxygen, in a wheel chair all the time. I'm not sick right? Or because I'm not 85. I can't be fragile. I'm young. I'm a Mama. I have a husband, a house, and kids. I have blue hair, and wear makeup (sometimes). How could I be sick?

Well look at it like this. Concealer hides nasty blue bags from only sleeping 4 hours. Or allergies. Or hives. Foundation can falsely create some color that most time I don't have anymore. Blue hair well that is just fun. Plus it does distract you from seeing my pale face, my non plucked eyebrows, and how sick I do look. If you really look. Most days. Sure I have good days. Great days, and shit days. Stretch pants are a must because most days I retain about 5 extra pounds of water. Most days I don't wear tie shoes. Two reasons. People with POTS don't bend over, and and my feet are always so swollen most days I can't get them on. So Crocs it is. I also gave my son my tennis shoes. My good pair because his came apart. I can't afford to replace them. No problem can't wear them tie ones most times anyways. 

I have a wheelchair in my room. It took me so much to ask my doctor for this. Why? It meant defeat. Yet when I get a Hemiplegic Migraine, and can't walk a few days I have to have it. Another thing most didn't know about me. Yet I still cook. I still get my stuff done. Just at a whole another level. I have modified so many things because of my fucked up body. Lighter knives. Plastic dishes. Plastic cups. A food processor. A Kitchen Aid mixer. A very light wooden rolling pin. Tiny little forks. Very light hair dryer, and tiny flat iron. I wear my hair short. Down to the clothes I wear. No buttons. No shoes laces hardly ever. I use a grabber to clean. Like the thing you see city workers picking up trash on the freeway. Yep I have one. I pickup laundry. Trash, toys, and anything else. POTS people don't bend down. 

So as you cook, clean, sleep, bathe, dress, eat, or whatever, take a minute to think. What does someone like me have to go through? It's never simple? Yet we troop on. All we ask for is to be acknowledged. That what we do is hard. That we are strong. That we kick ass. That you realize everyday is a fight. Non sick people take so much for granted. So please just TRY to understand what it's like to be me. Or what it's like to live with me.

Just Because I Have A Vagina Doesn't Mean I Don't Feel The Need To Support My Family

I got my first job when I was 14 years old. I did take a year off when I had my first child. I had other income coming in so I could do so. It wasn't like I took off work all the way. In that year I tried to go back to school, and I also had a part time job vacuuming the breezeways at the apartments I lived in. It was 2 days a week. I have worked from home, and worked outside the home. I always worked. Most of time I had 3 jobs.....one that was a day job that paid, the second I did hair on the side for pocket money, the third was my home, and family. All of which I don't get paid to do. Still a job all the same. I liked to work. I accepted it as what I had to do. I didn't mind. Many days I was on my feet from when I got up until right before bed. 

I feel this need to take care of my family. To pay bills, and be able to financially provide for them. I never was into that the whole Stay At Home Mom thing. Not that I thought it was bad, frankly I had to much energy to stay home all day. I also am a people person. I craved the attention I got from the many people I dealt with in my work. I like to please people. When you work with  the public you get to please many. Everyday if you are good. So work was not just 'what I had to do' it was a solace to me. Then at home I worked more. Most every night a home cooked meal, and a clean home. On top of school functions for the kids. It's what I did, and I liked it. Always on the go. 

Now you fast forward to the time now. Now I'm disabled. I don't work. This was such a hard time in my life. TO GIVE UP WORKING. It is still hard on me. Just because I have a vagina doesn't mean I don't feel the need to support my kids. I never bought into the whole man's job, and women's job thing. I'm a major Tom Boy at heart so I feel you can do what you want. I often had jobs I was the only women. I liked it that way. I didn't mind. I get along better with men. I was the same as most men. They feel this intense need to care for their wife, and kids. Well I have an intense need to help my husband 'bring home the bacon'. Why should it only be him that works? Only be his responsibly? I helped make those babies too. 

When I met my husband he thought that women should stay home care for the home, and kids. I informed him right away I wasn't that kind of girl. I will cook with the best, and I keep a clean house. I also love being a mom. However staying home to do so was not an option. It took a few years, but he realized he wasn't going to change this about me. He also realized after we started having kids that I could do both. Many times he couldn't keep up with me. I worked, and he accepted I needed to. Of course he didn't mind the help paying the bills either. 

Now I can't, and I feel like crap for that. I fight the 'worthless' feeling daily. I ask myself all the time 'could I go back to school? To learn a new less physical job?' Some say yes, some say no. I think about it all the time. I miss work. I miss all the things work gave me. Including money. The people. The fact that you accomplish things daily. You get paid for your talents, and knowledge. I see my husband struggle to make enough money, and it kills me! I feel that I have failed because I can't help him. He has never told me this, it's what I feel on my own. 

I sit here day after day, and think...think...think. Is this all that life has in store for me? Could I do more? I mean it's safe to say there hasn't been hardly anytime at all that I don't do little jobs on the down low. It's not much, and allot of time it kills me. Yet mentally I feel I have to. I'm always hustling up some money on the side even when my body doesn't like it. I just can't stay home all day, and do nothing. I may say nothing, but really it's not. I clean. Care for my youngest all day, and other 3 when they get home. I still cook a home cooked meal all the time. We rarely eat out. I even cook for others. I help friends out when they need it. So I do things, just things most often I don't get paid for. It is hard!

Mentally I'm still the same old me. Always on the go. Can do many things all at once. Mentally my memory is till good. I'm still sharp as a speedy plump little tack. However my new sick body often doesn't match my brain. My brain, and heart (body) are two separate entities. They usually fight over what I can, and can't do. Not very often, but some days I get LUCKY, and they are on the same page. Not very often. This get me into allot of trouble. How do I know which is right? The brain? Or the heart?

So I have been trying to get into some hobbies. Must of them can pay me to do so. Hey what can I say? I'm always hustling.......I feel I have to! So at least I'm trying to jeep busy, and earn a few bucks too. I don't know if I can ever fight the working urge? Who knows.....maybe I do need to go back to school?

Just never assume that giving up work is easy. At least not for me. Just because I'm a women doesn't magically make the not working transition easier. Not all women are created equal, and we aren't all the same. Just like if a man got injured on the job most would feel guilty. It would eat at them not being able to care for their family. Why am I any different? It doesn't go away easy.............................

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.

Never Simple

My life is never simple. It’s filled with rules, and restrictions, and things I have to do. This is my normal. This is the way I live. I have to do many things to just have an okay day. Nothing is as simple as talking on the phone, or going where I want. There is always strings attached. Many, many strings.

So no I don’t avoid you. I don’t ignore you. Sometimes it’s just to much for one day. Sometimes all the preparations are not worth what I’m trying to do in the first place. I’m over wishing that things could be simple. Things could be easy. That I was healthy. Or that I had more money. I’m not healthy, and I’m poor. I’m also short, and have hazel eyes. This is just how it is. My illness is a part of me just the same as my eye color. Sometimes it sucks. Just the same as being 4'10, and wearing a size 3/4 extra wide shoe does. Does that mean I don’t climb on counters to reach things? Ask my husband to reach things. My kids to climb for me. Footstools are a must in my house. As is sturdy chairs to climb on.  Sometimes I ask strangers in the store to reach stuff. I recently bought a tool to grab things up high. Sometimes I use spatulas, cooking spoons or fly swatters to reach things. Whatever it takes. I’m not going to NOT do something because of my pain in the a$$ height. I get it done. I find away. If plan A fails I hatch plan B. It’s never easy.......As like my very tall husband just reaches whatever on the highest cabinet shelves, and goes about his way. My vertical challenge will not stop me from getting the food on the top shelf at the store, and reaching my favorite bowl in the house. I just say “what do I need to do?”, and I do it.

My illness is the same way. I have to drink massive amounts of fluid a day. Take lots of pills. I have a list of food, that are not recommended. I’m lactose intolerant. I poop all the time, and therefore know where any John is anywhere I go. I pee all the time also. I spend a lot of time in the bathroom. I’m supposed to eat several small meals. I have to have things in my pure for pain, nausea, and runny nose. If I’m going to go some place loud I accept the fact my brain is gong to scramble. I won’t be able to think straight. My brain doesn’t do well anymore with stimulating environments. With lots of movement, and noise. I can’t drive much anymore. I don’t sweat so the heat is a big deal of things I can’t do. The extreme cold causes lot’s of pain, and numb extremities.  Everything that is done has to be planned. I have to ask myself allot of questions. Sometimes it’s as simple as can I handle it. My life is not just carefree do as I please anymore. I have to make choices, and choose what I want to do most. Planning. Nothing is without planning.

It’s always complicated. Always steps, and rules. I have learned to accept it. My life has never been day. Why start now? I embrace my complicated life for this is the cards I have been dealt. I can choose to be pist off or carry on happy. I choose to be happy about it. That is not to say that sometimes I don’t get discouraged. Sometimes I get pist off. Sometimes I’m sad. Aren’t you? Even those whom say their life is exactly the way the want it get these emotions. Why am I different? I just have strings attached. I still have normal human emotions.

You can love me the way that I’m or walkaway. I don’t have enough energy to fight with people anymore. On a daily basis. I have to reserve my fight for just living. So if I’m fighting with you all the time I have no fight left for me. To get out of bed. To do the simple things like clean my house, and care for my kids. It then becomes hard to keep a positive outlook. I can’t afford to not be positive about this. Hate breeds. The old saying ‘birds of a feather, flock together’. I don’t want to be mean, nasty, and hateful. I have no dire to be pist off all the time. Life goes on no matter how we feel. If I gave into all this negativity I would only feel worse. Mentally, and physically. I can’t afford anymore sick. I don’t have time. I have things to do. The same as you. I just have to do them differently. I still get them done. I can’t give up. If I did who would do everything for me? Not you or anyone else. So I mine as well fight like hell to be sure I can do what I need to do on my own. With all my rules, and strings. My many complications, and hard times. I just fight through it. You may not like who I have become, but I manage just fine. My method serves me well. I could be worse, and I could do less. I just wish you could see that I’m pretty amazing. I have lots of talents, and abilities. As does everyone in this world. I’m not just ‘this illness’, and all its complications. I’m still me just a little different. I can’t afford to not be strong. I will not let this illness win. I have better things to do. I also have plans. They may have changed, but plans all the same. I was meant to do more than this.

So everyday I wake up with a fight, and I end my night with a fight. How I choose to win my fight is my business. You may not agree, but in the end I get things done. Despite I could have many excuses. What’s the point? Other than I have my own standards to live up to. So I will keep fighting, and I will keep being me. Just slightly different, and changed. Still the same me inside. It’s a shame you don’t see it.

Migraine Triggers. Put that chocolate bar down!

Often people with migraines have triggers. You have enough of them you figure them oyt. It was brought to my attention about a year ago by my neurologist that foods are common triggers. Common foods: chocolate, caffeine, artificial sweeteners, nitrates, MSG, nuts, aged meat/cheeses.

He said to keep a journal. I'm like journal phhhhhh whatever. I did start paying attention to what caused headaches. He is still on my bunghole about the journal! Okay doc I will DO IT :) It does have a place in the world. I just 2 weeks ago learned of a new trigger. So that's why he told me write stuff down? What I ate etc; Plus the guy is trying to get my meds down to a science. I do keep track of how many migraines I have. So I kinda journal right?

 I learned right away nitrates does it every stinking time! So that also covers aged meats. Pepperoni, salami, and stuff like that. They also have nitrates. Nitrates are also common in hot dogs, lunch meat, bacon, and ham. So read your labels. I found lunch meat, hot dogs, sausage,  and bacon without it, and also without MSG. Nitrates will give me a migraine every time. EVERY TIME. So I have to be careful with this one. I like me some bacon, but is it worth it? The pain, numbness, puking, disco light show my eyes put on for me? The smelling cat pee, and burnt rubber?

Chocolate! Crapsicles! Why Dr? He said that its something doctors don't understand that people with migraines will crave chocolate almost insanely like pregnancy craving before a migraine then get a migraine. It's something they don't understand. It's also part of a migraine predome, and I need to pay attention! Scott is shaking his head yes! I have made the man go to the gas station in the middle of the night to buy me chocolate. As a kid I didn't like chocolate that much. I was a hard candy kid. Jolly Ranchers that kinda stuff. So ahhhh this chocolate stuff is all making sense! So chocolate is out. I can't lie. Sniff sniff I will miss that stuff. Sometimes I still eat it, and suffer later! So now to just get to school to stop sending home candy bars to sell. Every parent feels they must buy from their kid. As a parent it’s on page 146 of the parent hand book that we as parents must buy form our kids fundraisers. So I do, and I pay. Over, and over I might add. With nuts, and without, caramel, and rice crispies. Them evil fools.

MSG- Monosodium Glutamate. This a hard one. This stuff is in everything, and can be hidden other names such as textured protein, autolyzed yeast, yeast extract, glutamate, glutamate, glutamic acid, autolyzed plant protein, sodium caseinate, calcium caseinate, hydrolyzed protein, hydrolyzed vegetable/plant protein, and soy protein extract. I try to avoid it whenever I can, but sometimes it impossible. I was in my favorite Ranch so I switched to one without. It’s mostly in processed foods. I cook with an onion soup mix allot. I found one with MSG. I switched to these concentrated beef/chicken/vegetable packets to flavor soups that don’t have MSG for when I can’t make my own stock. Some things it’s just so hard to avoid. Like in cream of mushroom soup. I have 2 things I cook, and use this. I found a version without ‘added’ MSG which by far is way less, but still some in there. I need to master making my own, and canning my own. Or even freezing it will do. I’m a good cook I’m sure it would be tasty. It is one of those things it may bother you. It may not. I’m not extremely sensitive to the MSG, but what I did notice was if combined with another trigger, or if MSG was in more than one thing than I got a migraine. Or if I ate something with added MSG along with something with naturally occurring glutamic acid. Like tomatoes, mushrooms, aged cheeses, or even chives. So I cut back as much as I can to added MSG for the fact that is somewhat easier than to avoid eating a tomato. I need to journal more. I really do. The hubby thinks that I get headaches after eating the foods that are high in glutamic acid. So I need to write this down.

Artificial sweetener. He said that if I had to eat artificial sweetener then go with Stevia, 2nd choice Splenda. Stevia is natural so that was caught my eye. However I haven’t got used to the taste yet. I was told not eat a lot of sugar as sugar causes inflammation. Yet artificial sweetener can cause a migraine? So now what? I don’t drink a lot of soda, but now when I do I went back to one with REAL SUGAR. I don’t drink more than one a day. I cannot lie I miss my Diet. Dr. Pepper, but doc was right. That sugar knock off was giving me headaches....... I wish they would make that Dr. Pepper with real sugar again! Like they did for a limited time. I may only drink one a day, and will goes days, and not drink any. That makes them taste all the better. LOL. As for to sweeten the coffee also another one I don’t drink much. I have a peppermint coffee flavor with sugar I like. It’s sweet enough I don’t need anything else. If I’m someplace else Splenda it is. I just can’t do the real sugar yet in things like coffee or tea. Just can’t went to long NOT using sugar. I think the only reason I “like” the soda with sugar is it takes me back to being a kid. Like what pop tasted like then. That whole nostalgic thing? Sugar, and corn syrup don’t taste the same! However I do agree they both make you fat, and they are both high calorie. I just like sugar better. It’s not as sweet. Yet as for coffee, and tea. I’m just not ready yet. I’m working on it. Give me time. Maybe? Maybe I will give Stevia more time.........

Alcohol is another common trigger. No we are not talking headache hangover type trigger. The alcohol can trigger a true migraine on some people. I don’t drink enough to know if this causes me migraines or not. When I do drink it’s such a small amount I’m just not sure. I’m sure maybe if I got totally drunk it might? Then again may I not notice over the regular hangover crappy feeling?

Lack of sleep, or to little sleep. This is a common trigger. My sleeping is messed up so this is a toss up? I just thought I would mention it. Just in case? Lack of sleep makes everything more crappy. So bottom line try to get more sleep, and sleep your normal amount of time.

Stress. Well no sh@t Shirlock! Stress will do it every them. Plus raise the bp, and make me sick to my stomach. Then next day I have a migraine. Avoiding stress is easier said than done. I just say avoid the negative in your life. Like people. If they are not bringing positive to your life, then cut them lose, or limit the time you are around them. Try to limit your stress you will feel better for it. I know easier said than done some times. Just try.......

So pay attention to what does, and doesn’t cause your migraines. Often you will have triggers too. You can avoid them, and get less migraines. This is helpful. It also helps when you can avoid migraines because then you can avoid pain medications, and their added side effects. If you know things that cause migraines then it helps you to feel a little more in control by being able to prevent them. Like I said before easier said than done. Noone is perfect, and I mess up. OFTEN. Just do your best. Noone knows your body better than you do.

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!