Monday, July 30, 2012

I Have A New Website

Hi all! You all have been great to me. But it has been time to move on to bigger things. So would you please follow me on my new website. I finally did it! I got my very own website. Man it has been some hard work. But it will pay off. I'm sure that I will still need to change some things along the way. But I will keep learning. Now to plant my little seed, and watch it grow my frineds. You have not heard the last from me in the slightest. So please continue to follow me on my new BLOG. I would be so sad it you didn't. Much love to you all!

Saturday, July 21, 2012

Migraine Faker? Well Then You Are A Jackass!

You hear it all the time. I hear it all the time. I bet if I asked my kids they hear it often at school. I bet my Grandma June hears it all the time too. It's a phrase we all hear all the time. "I have a headache", and I'm sure you also hear the phrase "I have migraines" too. Sadly migraines is a term that gets thrown around these days. All too often. Doctors misdiagnose it. They get frustrated when a patient "has allot of headaches". People fake it. To miss work? To get attenttion? Or whatever reason I'm clueless to? Yes I have headaches, and yes I have migraines. I not only have Classic Migraines. I get to have Migraines with Aura, and Chronic Daily Headaches too. Then for fun every once in awhile my brain decides to throw a party, and I have Hemiplegic Migraine. These Migraines don't bullshit. They don't fuck around. They make me puke, shake, nose run, eyes water, smell cat pee or burning rubber, I'm sensitive to lights, sound, and I'm even sensitive to touch. Sometimes they make my speech jumbled, and my whole left side go numb. It might take me a week to gain it's use back. So I'm in a wheelchair, then cain, then walk again. These Migraines are very similar to a stroke. They feel like a stroke. The numbness weakness etc; Only in these Migraines there is no permanent damage. They think? Your brain usually heals, and you regain use of your body again. All while physical therapy, and occupational therapy have to be done. Every time I have one of these headaches. Not to mention that the headache I get when I get those headaches usually lasts a week or more. They migraines are leaving multiple lesions on my brain. So the doctors are unsure what damage they are doing to my brain. They speculate it is from me having Migraines in the same spaces every time. I also have Classical EDS. So I'm more prone to abnormal scar tissue, and not to mention I have a weak vascular system. Then there is the fact that these lesions are sometimes common in anyone with Migraines in general. So I was doomed to get them. Just at a faster rate, younger. Not to mention that people with migraines are at higher risks for stroke. So every migraine we get the risk is there. When people have prolonged Migraines the risk gets even higher. Me having EDS, and POTS my risk is huge. Me having a prior stroke my risk of another stroke is ginormous. So it's something I think about. Always. So think about that for one little minute. If I'm in a wheelchair, or I have a headache for a week who takes my place at home? Who feeds my kids? Cooks meals? Makes me a glass water when I want one? Because let me tell you something the pain with those is so bad YOU-DON'T-DO-SHIT-BUT-STAY-IN-BED!!!! Now maybe you start to see why this just might pose a problem, ey? Ummm ya? Me too. The doctors have tried hard to prevent them all they can. I'm on as many preventives one can be on. I figured out allot of food triggers, and stopped eating/drinking many of those foods. I slip up rarely sure. Rarely. I do all I can to prevent them. I do get way less these days, and that is a blessing. So to hear the term migraine thrown around so loosely just makes me wanna vomit in your Cheerios. I mean really? Do you think it's cool to amp up your hangover headache to a Migraine? Migraines are a neurological condition. That is why seizures medications are prescribed. Studies have proven that migraines are very similar to seizures in the fact that it's abnormal electrical activity within the brain. Seizures is one way the brain responds to these abnormal impulses, and Migraines is another. But it seems these days I hear lots of people are having 'Migraines'. I do know allot of my friends that do have Migraines. They also have EDS, or POTS, or maybe both. I also know people whom just have Migraines. I see them suffer. They know what a Migraine is really like, and they would never wish it on their worst enemy even if they pooped in their oatmeal. Because they know how much they suck! So why do people fake them? Why is it so cool to say "I have a Migraine"? My hubby gets headaches. They are not migraines, but none the less he gets some pretty bad headaches. He says "man my fucking head hurts like hell. I think I should take some medicine". So see there folks why is that so hard? Why do you think that trying to fake a neurological condition makes you cool? Sadly Migraines are easy to fake. And people do. Often. Just like orgasms.

Friday, July 6, 2012

I Have Bad Days Too. Sometimes I'm A Flat Out Bitch

When I feel bad I'm a bitch. When I'm sad I'm a bitch. When my body hurts you guessed it. Bitch status for sure. When I'm confused. Yep bitch. When instead I should say 'hey I need a hug.' Or maybe I could tell my husband 'it would feel great if you would hold me.' Or when it's physical things that bother me I could merely ask for a pain pill. Or a heating pad. Or even my hubby to rub my head when I have a migraine. Will he do these things. Most times yes. Will I ask? No. I just want him, and all others just by some mythical powers to.....just know. To know what I need. To know what I want. To state my needs, and wants makes me weak. Makes me less strong. Or so I have made myself think. It lessens my bad ass powers. Pussies sit around, and ask for drinks, and pills, and food. Ya, and stuff. So in my mind I have made myself think that if I ask for things it makes me weak........ I haven't always had things easy. So I live with this constant need for approval. I get mine by being a hard ass. By being tough. Well if I had to ease up the reigns, and be not so tough well then would I be me? I have already lost so much of me with this illness. What I do have left is my fight. My bad ass status. You take that away? Well then who am I? What am? What is left? Sorry folks I'm not set up to be Suzy House-maker. To sit around, and be all tra-la-la-la-la. In a nice dress, and heels. Who you can always count on to NOT make a scene in the grocery store. I cuss. I love tattoos. I do things the wrong way. I'm the chick who will be 80 with pink hair. I have no desire to conform. So if I have to start being all 'baby please hold me' then I feel like I will become a pussy. Yet then I cannot not go on treating those like shit when I hurt either? So what's a dame to do? I got myself in a little pickle. This is illness. This is life. It sucks sometimes. It's hard sometimes. I will not lie about it. I will not sugar coat it. I have been a bitch to live with for a feel days. I have had some of the worse pain EVER these past few days. I mean like walking on glass then legs feel like someone poured screaming hot lava in your skin. So then when I hurt I wanna piss myself. So I have to walk around with cross legs. Then that neuropathy pain triggers a migraine because I get lazy, and eat trigger foods. Then the pain itself causes a tension headache. The pain makes my heart goes crazy. Tachycardia like a mofo. Then mu colon gets jealous, and say me too! So it goes nuts, and poops 10 times a day. Ya I wanna get up to poop with lava feet! The pain has been so bad my pain pills hasn't touched it! But still I need to pull my head out of my ass. This is my family. It's not their problem I hurt. It's not their business. Just like I always tell others. NEVER TREAT PEOPLE LIKE SHIT WHEN YOU FEEL BAD. IT'S NOT THEIR PROBLEM, OR BUSINESS WHAT YOU GOT GOING ON. THEY GOT THEIR OWN DRAMAS. Well I need to take my own advice. My hubby is a good man, and my kids are good kids. They deserve a million gold stars fore putting up with me! I have been in one those 'oh I wish I was normal' ****banjo playing**** moods. I wish I was the old me. I wish I was normal. Sniff sniff. Fuck that! That shit is gonna happen about as soon as people quit bitching about government, politics, and religion. Ya see NEVER! So the sooner I suck it up the better. I just need to explain to my man what to say to me when I feel like this. Or to NOT say. I have been bummed sure. Lave legs, and pissing ones pants would do it to anyone! It never lasts long. So when I disappear for awhile just know it's one of my moods, and during these moods I don't play well with others. Yes baby even me has bad, unsocial, pist off moods. And it is okay. It's okay because I deal with that shit! I don't judge others that are not like me. The house wives, the anal no cussing folks. The Bible folks. Just as I expect the same no judgment here too. This world is large, and takes all kinds of folks to make it whole. I'm just one of them. I'm right. You are right. There are 1000 ways to do things. All of which are right. When I get confused like this I think of my favorite Pink Floyd song. In The Flesh. Here is my favorite part. With that I will leave you with this ramble. This is a day in my life. How it is. How I feel. Real uncut. Un perfect. Insane at times. No rainbow farts today. "Tell me is something eluding you, sunshine? Is this not what you expected to see? If you wanna find out what's behind these cold eyes You'll just have to claw your way through this disguise."

Wednesday, June 27, 2012

Are You A Internet Whore?

When you look at my Face Book Timeline it is always filled with activity. I commented to this. I said that. I shared this. So, and so posted this on my Timeline. I posted a photo on a certain someones Timeline. Often there are uplifting posts from people asking how I'm doing? Leaving silly photos, or maybe they just want to say hi. Almost always this is a daily occurrence. From the outside looking in it looks like I'm a Face Book junkie. It looks like I spend way to much time online. Maybe I do? Do you really know? Then there is my blog, and my two Face Book pages. There is my cook book I'm writing, the poetry, and I'm working on a children's book. Often when you see me you see me on my iPad, laptop, or cell phone. Yes, I'm online. Quickly so many people have made so many BAD assumptions about the time I spend online. They assume the worst. Even my own family. They think I have taken to the internet to avoid things. To be lazy. To run away from reality so to speak. Or that I have taken up a crazy new lesbian love with my electronics. So let's take a crash course in my illness for just a quick second. Okay? I have Ehlers Danlos Syndrome. It causes pain. Lots of damn pain. DAILY. Some days are better than others, but it is always there. Pain. Not will I have pain. How much? Next I have POTS. That causes a whole list of things. From chest pain, to the shits. POTS always makes it difficult to stand up. Then I have severe Migraines. Sometimes they leave one side of my body paralyzed. I have a headache everyday too. Not will I have a headache? How bad will the headache be? So needless to say I'm a mess on some days. Some days I can't do much. The internet serves as distraction. It keeps my mind away from the pain. It keeps my mind away from the 'wooo is me'. I talk to people on there. I read about things online. I watch funny videos on YouTube. I read other peoples blogs. Most of all I connect with people just like me! People with EDS, and POTS. People who just get it. People who lift me up. When I'm at my worst they tell that 'things will work out', 'you can do this', 'we KNOW how you feel'. When I had my stroke my Facebook Timeline was filled with uplifting posts from these online people. They also called me nonstop in the hospital to check up on me. Do you even get it you asshats? First off when one is online what are they doing? Even a normal person? Ya you guessed it Einstein. They are usually sitting, or laying down. You can surf the web in bed. On the couch, or even on the John. So why wouldn't I? Not to mention that these days the array of things one can buy online. Even TP. Most websites if you spend over 50 you get free shipping. Like that is hard to do. But I take it up a notch I have an Amazon account. Real friends? You bet your ass my online friends are my REAL FRIENDS! They call me when my own family don't call me. When I was in the hospital this last time my mother called me, and several of my online friends called. No other family did. So ya they are real friends! They called many times. When my own family did not. I even received get well cards in the mail. From my family? No. My online friends? Yes. You could look at my Facebook Timeline it was flooded with concern. Friends? Have one the nerve to NOT call them friends is an idiot. This constant support keeps me going daily. Do I get it from my family? Other than my husband, and mother? No. Do I need it? Ya, but that hasn't made my extended family step up to the plate. So I have learned to let go a long time ago. Even my real friends checked out a long time ago. I can't say I blame them really. They have lives to live. It still hurts though. I don't know where I would be without the support I get online. This support helps me through on even my darkest days. I get THIS online. Better than any therapy if you ask me! In fact it is my therapy so to speak FREE of charge. I also give this same loving support to many people online with chronic illness. Chronic illness sucks, and when you happen to have rare ones it sucks even worse. Not like I can find a local support group. When your odds are 1in 20,000, and you live in a town that has only 400 people. Next town over 8,000. Do the math. I also shop online. I even sometimes buy my families TP. When you have an illness that makes standing hard, much less walking online shopping works. Shopping online means I can shop longer. Browse longer. Look more. I can shop at my terms. My time. When I feel like it. I'm not locked in to 'store hours'. If I actually go shopping I might last an hour, and want to punch an old lady. So if you want a gift you actually like. Don't judge me, and my online shopping. Otherwise you might get underwear, or a package of Ex Lax, as those are the isles I frequent in an actual store. Even my kids have learned they get better things this way. As I don't have to grab the first thing I see. As I need to get home, and get my feet up. So before you judge me. Get to know me. Get to know what my life is really like. Because if you did you would know that I can be online as much as I'm, and still do many things at home. Why? I'm good like that. Because if you think for one minute that I don't do things at home. Hahahahah Outside looking in right? Look hard. Look real hard. You will see.

Monday, June 18, 2012

When Marriage Roles Change

Remember when you met the love of your life? Close your eyes, and think hard. Think back to a time long ago. To what made you love them. For me it was 14 years ago when I met my husband. When begun dating 2 years later, and married 2 years after that. We just celebrated our 10th Anniversary. I can remember clearly admiring his nice ass in his Wrangler jeans. His deep brown eyes, and his shy nature. His had this amazing patience to him. He could fix anything. He looked so fine riding up to his Mamas' wedding on that horse in that black tux, and cowboy hat. He taught me how to be simple. How to slow down. I traded in trips to the bar for walks around Fall River Lake. I learned that there was fun to just drinking beer in a drive way around someones pickup. I laughed so hard getting my truck muddy 4 wheeling. All this from a girl who washed it once a week no matter what. I sure in the hell never drank beer before him. Now all these years later beer is a fine pleasure of mine. So you get comfortable in the person you fell in love with, and established certain rolls in the marriage. He does this. She does that. Like in our home. I paid the bills. Handled all the money. I mostly cooked, and cleaned. I did most of the grocery shopping. He did all the mowing, and lawn care. He maintained the cars. He maintained the house. We both cared for the kids. We each did the kid duties. Bathing, diapers etc. I did do more of the taking them to the dr, and staying home when they where sick. As I had a job that was more flexible to do so. Any real important appointments he did attend. I cooked most of the meals. You have to understand I LOVE cook. Even when I worked my family had a home cooked meal almost every night. A good one too. I cleaned mostly. I did most of the laundry. Sure he helped, but I did most of it. But I have never since my marriage to him had to mow my lawn, change my oil (unless I merely wanted to). He did those things mostly. I was the primary care giver when people got sick. The hubby, the kids, or anyone else. I always rushed to help anyone I could. When I could. I was always on the go. I hardly ever slowed down. You could count on me............ You fast forward to when I started to get sick. I need cared for. I was instantly unable to do things that I couldn't do anymore. My memory sucked so bad I couldn't be trusted to pay the bills. It wasn't that I didn't want to pay them. Or that we didn't have the money. I would merely forget. Things like electricity, water, and gas are mighty important when you have kids in the house. The once women who always made sure there was a fully stocked pantry, and never out of anything. Was now doing good to be sure we had all the ingredients needed for Spaghetti. I had to write each meal item down. Spaghetti: Pasta, ground beef, and sauce. Make a list, and check it twice. Recipes I had made for years I was getting the cook book out again to reread how to make. These where recipes I wrote, and pioneered. Not to mention how do I do this with my new found fatigue? What the fuck? I was never tired before. What the fuck was happening to me? What was happening to my mind? How am I gonna get my shit done? With all this tiredness, pain, and migraines? But in the meantime as I wallowed in my own shelf pity someone had to pick up the pieces. Don't think for one minute my babies went hungry. That someone was my husband. He had to start cooking, shopping, cleaning, paying the bills, and caring for me. Then I would bitch at him he didn't do it like me. That damn it he couldn't make from scratch a homemade Beef Rice Pilaf like I could. He choose to grill cheese burgers. Or he would feed my kids frozen pizza. Or that he left dishes over night. Pain makes me a bitch. I was in pain. Only instead of just saying "I hurt I'm mad as hell because I hurt!" I was finding petty reasons to bitch at him. Men are different. They like different foods. They parent different. They clean different. They are not Mama, and they don't do things like Mama would. So I was MAD about that. Mostly mad because I couldn't be Mama like I wanted to be. I should have been thanking him for caring for me. Don't get me wrong sometimes I did. I wasn't on bitch mode 24-7. What I did not do at first was think to ask him how all this made him feel. I know it hurt him. I just didn't want to hear it. Why? Because I didn't know what to do about it. I was already fighting my demons that I was sick, and couldn't fix that. That I was NOT going to get better. Now I had to ask my MAN to be Mr. Mom too? A man that worked an average of 12 hour days? Then to wipe his wives ass too? My hubby, and I take marriage serious. Marriage to us is the real deal. So never in this sick game did I think he was going to leave me. Or divorce me. I knew he was here to stay. But that doesn't mean times where always eww eee goey eee farting rainbows, and all puppies, kitties, and lollipops. There where, and still are some hairy times. We have had to adjust. As our roles have had to change. We are doing things now that years ago when we met I'm sure had you asked us we would have said 'I'm never doing that'. The key to any successful marriage is making it work. Not giving up. Finding a way! To figure that shit out. Illness is damn hard, and sometimes before my illness was a bitch to live with. Now that I'm sick that bitch power on certain days is times infinity. I know it's hard being married to me. Me in general. It's super dooper hard being married to me now that I come with all these health problems. It's FUCKING HARD as hell. I one time considered getting my man a rodeo buckle for it. You see he used to ride bulls. Baby I promise this is harder than any bull ride. Try for one fucking second being me though. How HARD it is being ME? What my day to day life is like. Taking a shower is hard. I sometimes bang my head on the shower wall in despair. Then I have 6 other people counting on me. They want dinner, and clean clothes. Some days I can't. Period. There is no if I should. If I could. I can't. So the shit piles up to a good day. So then my good days are spent catching up. So then the day after the good day I'm exhausted from doing to much 'catching up' on the good day. You see it's a vicious cycle. I try to keep up, and lose each time. Laundry, dinner, dishes, and kids. To the once women who had two jobs, and still the same kids. Then cooked. Then still had energy for friends, and family. Not anymore. You bet your ass laundry wears me out. Believe it. I don't fake nor do I wan't attention for my illness. Far from it actually. When I want attention I color my hair pink. Or say fuck a bunch times on FB. Or tell a raunchy joke. That is what I do when I WANT noticed. My illness? I still think deep in my mind 'I'm not that sick' I know that doesn't make since to allot people. It gets my ass out of bed. If I made myself believe I was as sick as I was then I wouldn't do as much as I can. Even though that isn't as much as I would like. I'm very sick though. I really am. I just don't desire attention for it. My hubby, and I go rounds about this. When I need cared for I'm like 'leave me alone, and I'm fine'. I might say this with a pain scale 9 migraine. Or when I have chest pain, and can't breath. In fact I said this when I had a stroke, and couldn't walk. I drove myself to the hospital. In pain left side all numb. Attention? For illness umm not here. The attention I need from my man is the same as before. Sex, cuddles, kisses, affection, compliments, and conversation. That is what I need. When I want his attention I grab his balls. Cook him a steak. Say boobs. Because I don't know about you? When he cares for me he is in daddy mode, nurse mode. That is cool when I need it. Cool for attention? Not exactly. It's not exactly sexy. Deep down I'm still me. In here someplace. I still like the same things. Desire to do the same things. My personality had not changed. Just the things I can do have changed. I know as a spouse it's hard being married, or staying married to a gimp. This isn't what you signed up for right? Well try being me! Sure a spouse can walk away. You only think you can wash your hands of illness. In mine, and my hubby's case we have two kids with EDS. So he isn't getting away from it. He can divorce me, but then he still deals with it in his sons. Say you don't have kids? Well you got memories. That sick person is still the man, or women you fell in love with. You just need to find them in there! Get to know us again. Ask yourself, are you in love with the person you married or the tasks they can do? Because I don't know about you my man sucks making hot dogs. He burns them every time. I happen to love hot dogs. So had I based my 'love' for him, and this ability to grill hot dogs we would be in serious trouble long ago. Along with his blackened weenies. Does he do everything right? No. But his ass still looks good in a pair of Wranglers, and a cowboy hat. He still has the same lovely brown eyes. I now see those eyes in one of our sons. No love doesn't pay the bills. But it sure does make you feel all giddy inside, and it makes some pretty babies. Babies that need harmonies in the home to live in. Think of the respect, and compassion you teach them at young age if they witness YOU caring for your sick partner. Life is all about change...........Marriage would be no fun if it was always the same. You took an oath. You remember the whole sickness, and health thing? I'm so glad that vow is special to my husband. Because now is when I need him the most. Ya tough girl me. Needs him the MOST right now. He used to always need me. Now I need him. Our roles changed.........that is just how it goes. So what?

Sunday, May 20, 2012

I Hoped You Have My Sense Of Humor Not My EDS

When you are diagnosed with a chronic illness you go through all the same grief stages as one does in death. Anger, guilt, grief, resentment, blame, extreme sadness, and eventually acceptance. We won't even go into what it's like when you throw in the fact that in death often you have lots of family support. Death brings out compassion is most people. Death makes people sad. When they are sad they tend to want to make you "feel better". Chronis illness confuses them. When people can't relate to something they run fast. It also makes prole unlike you. Sad as it is. Remember that old saying 'birds of a feather folk together'? Well when you are an odd bird they kick your ass out of the nest. At times in chronic illness you lack this vital support. With the stages of grief there is no certain order. You can go backwards at anytime. It's normal. It's perfectly normal it's just the way it goes.

So just as it seems I got cozy in my own chronic illness boots it was time to test my children to see if they too inherited my fate. My husband, and I always wanted a large family. With as many kids as we could have. With each pregnancy I was totally unaware what I might be passing on to them, and of all the risks that went along with it. At that point I just knew I was 'different', and perplexed doctors. I had pain daily. I was unaware I had EDS when we made the decision to have a large family. Also unaware of the 50% chance of passing it on to each child. I just knew I loved children. I was good with them. I always wanted to be a Mama. My husband merely said "I want as many kids as you will have". So imagine my shock when I got sick in my late 20's, and I found out each kid had a 50% chance of inheriting EDS. I was completely torn to pieces. I beat myself up in more ways than any mother should ever have to endure.

The first few years of my EDS diagnosis where focused on stabilizing me. As I was VERY sick at first. Mostly with POTS. Oddly enough POTS was diagnosed before EDS. The POTS diagnosis was only the beginning of my health discovery. As why all my life I felt different. My POTS is secondary to my EDS. So it was all pieces to my health puzzle. Of complicated rare conditions. After getting me diagnosed, and feeling a little better then we decided to switch gears and find a childhood geneticist. We wanted to get the children evaluated for EDS to see which children had EDS, and which did not. My oldest, a daughter decided not to get tested until later in life. If the need came up as she aged.  She was 16 at the time, and not really showing any symptoms so we let her make that decision. She didn't want any illness coined to her to ruin her career choice. As she is a healthy active girl. Who runs, exercises, and does allot of physical exercise. She is in great shape. We respected her decision as she made one with her future in mind. She is well aware the "and if's, and might be's". So if she where to get ill later in life then she knows what to be evaluated for first. The other 3 boys we decided to get tested. Two of our boys have always showed symptoms. The third boy we where confused about. He had some symptoms, and some symptoms he did not. Our 5th child is a foster child (not that we love her any less)it just means there is no chance she has EDS.

We found a childhood geneticists through our state children's hospital, and it took a year to get into to see him. What a nervous wait! I just want to know now already! Damn it!!!! With each pregnancy you have dreams of what you want the baby to be like. You dream. Just because one has many babies doesn't mean they dream any less. Nope. We still dreamed all the same. We still gooed, and gahed over the baby clothes each, and every pregnancy. You dream of babies. You talk about babies allot! We watched those Birth Stories on TLC. Signed up for the monthly updates online. Go to Babies R Us once a week for the million things the baby will need.

You think 'I want the baby to have my hair, my eyes, my funny sense of humor. My witty charm, my ability to cook, daddy's shyness, daddy's eyes, daddy's nose or daddy's height'. You think of all these possibilities, and combinations of what the baby might be like. Never in you dreams do you think oh my baby might have EDS? My baby might have POTS? My baby might have Spina Bifida. Anything else horrible like that. All baby dreams are puppies, kitties, rainbows, and unicorns.

So imagine how I felt when I found out my oldest son, and youngest son had EDS. Naturally I blamed myself. As a mother we blame ourselves for anything that goes wrong. But when I was the one with EDS who else was there to blame? My husband didn't blame me. I know my own mother didn't blame me. But I still blame me. How could I not? It just seemed like the thing to do. I was so filled with emotions it was crazy. I know doctors say that with EDS the sooner you find out the better. You can prevent a lot of damage to tissues involved. But that didn't make me feel any better at all. It also didn't help that everyone that talked to me about it repeated the same thing 'well you found out soon'. They all mean well, but my pain was a huge deep hole of black quick sand I was falling deeper into everyday. It just seemed to make my guilt worse. Now I have an answer to why they woke up at night in pain. Why the oldest son was breaking so many bones. Why the youngest ones sons legs hurt all then time. Why they have flat feet. Why their skin is so soft despite lotions or creams. Why they are flexible, and bendy. Why they scar abnormally. The oldest, and his eyes which are problems common in EDS. Why they have trouble sleeping. Why they have crazy stomach problems. Why they're just so much like me. It all made sense now looking back on it. It was really spooky actually. The youngest son even has my bowel problems. He goes to the toilet 30 minutes after he eats. Just like I do. So much is making sense.......... Then I get sad at all the things in life they won't get to do. Will they be able to play football? Soccer? Wrestling? They won't be able to do rough things. Doctor said no contact sports. That makes it hard when they're boys. Because boys are so rough. Then of course what will it be like when they have families of their own? Will they want to pass this on to their children? So many things to think about, and I think to damn much. To damn often. All the freaking time. My mind never shuts up. So of course as a paranoid Mama I have let all the possibilities go through my head. Clear up to the real severe. Sheesh I really wish the hamsters in my head would let me have a break. Maybe some thinking silence. That would be.....well ******crickets chirping***** weird.

I dreamed you'd have my eyes, my hair, my funny sense of humor, my lips. Daddy's eyes, Daddy's, nose daddy's long legs, daddy shyness. Not my EDS......

Monday, May 14, 2012

Love Is Unconditional Unless Your Life Sucks

We hear it all the time. "I will love you no mater what". "Call me if you need anything". "I will always be here for you". "Let me know what I can do to ease your pain?" "Call me anytime, night or day I don't care the time. I will do whatever it takes to ease your suffering". "I will do anything to help out. You are my family"."You are my friend. I'm here for you." "Your my neighbor I got your back" blah blah blah..... freaking blahbeey blah!

So you believe them. Each, and every time! Then when it doesn't happen you are left there with some serious emotional baggage to hold. Anger, sadness, and guilt. But mostly you ask yourself what did I do to deserve this? Is this something someone needs who is chronically ill? This added stress? As if we don't have enough worries.

 For example, I was recently in the hospital for a number of days, and only 2 family members called me. My Mother, and 1 sister. Now mind you I did get phone calls from several of my fellow Spoonies. There was not a day went by my fellow sick friends where not checking in on me. While I'm glad my Mom, and sister called me. It leaves me with the question? What about everyone else? I have in laws, and a whole lot more than one Mom, and one sister. I have a HUGE family. I thought I had more friends. I can't help, but hurt.I'm human.

Some say well they didn't want to bug you. They scared you where sleeping etc. My Father in Law called my husband many times each time telling him the whole "I didn't want to wake her up" or "I might wear her out". He would tell him how worried he was about me. Man translation. If I wear to to talk to my daughter in law, and she said she wasn't doing good or that I sensed it I would worry worse. I'm a man I can't fix her so I will just stay away until someone can fix her. I understand. That is just how he is. He then followed that by. "Son I'm worried about you. How are you holding up? Did this scare my Grand kids? Are they okay?" He was concerned. A couple phone calls from others to the hubby "oh what's wrong with her?" Doesn't count people!

Guests in the hospital? Other than hubby, and kids. One! My daughters' GySgt came to visit. While this made me happy as I love her company, and I was happy to have a guest. She is a blast to talk to. Really? Family? Friends? Nope. I know allot live far away, but allot don't. This hurt me bad.

Made me realise that my illness has become just another day to everyone else. I'm no longer a person. A sister, an aunt, a cousin, a great friend. I'm just the sick chick which is sick all the time.

So call me an asshole. Call me wrong. I don't care. Is it so much to ask that when someone is in the hospital that you call? Just quick say 'thinking about you'. Especially family? That maybe you could go help with my kids? Maybe please?  Especially when my kids are home alone taking care of themselves? No one to help. And my family is how big? Everyone is busy? Really? All at the very same same time? Every day all day? Each, and every crisis I have had? Surgeries? I live in Arkansas not Africa. You don't have to cross the Red Sea, and get a Butt Exam buy Udo to get here.  There where times I helped many of you. Especially before I become so ill! I remember taking care of kids, helping people move, helping remodel houses, talk about problems, hang out, shopping trips, loaning people money, dog sitting, babysitting, always cooking for Lot's of people, and much more! So now when it's my turn I'm getting a whole lot of nothing.

I have a right to be pist.
I'm human.

Don't get me wrong I have a few people that are there for me. Always the same ol' people I can count on. That isn't what this is about. Nope not THOSE people. Not the ones who helped Scott, and I all these past few years of struggle until my disability came. Not the one who helps me now when I struggle. Nope not them! Sad thing is those people are the BUSIEST, and the most broke (money wise one of them) yet they give, give. The other has time for me when others don't. How does that work? Nope not those people. Which it's a SMALL number believe me! Which it shouldn't me. When I belong to a pack so big.

Surround yourself  around those that bring positive into your life, and cut out the negative. Your heart depends on it.

"Happiness is one heavy metal song away"
~Paul~ :)

We can all relate to this song. It helps me not feel angry anymore. It makes me laugh... It's just one of those days! You know what's cool? When I'm granted a new day tomorrow it can all change. For the better! But for today I'm going to embrace the suck. Piss, and bitch about it. Not everyone can be happy all the time. Because if they where well then they are on some serious dope.

Tomorrow will be a new day, and maybe just maybe a new outlook. I said maybe. ;)


Wednesday, May 2, 2012

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****

Tuesday, April 24, 2012

To Take Pills? Or Not To Take Pills?

Having Ehlers Danlos Syndrome is a real pain in the ass. I do mean that literally, and figuratively. I have Sacroiliitis, and it causes me pain. Also stiffness, and even makes the joint hot to the touch all the time. It also causes problems for my pelvis in general. So don't ever play spank me. Oh no don't ever. Mama will come around swinging every time. I also have Scoliosis, problems with my knees,  shoulders, neck, hands, feet, and I get frequent migraines. I'm sure I left things out. As when things are painful they all just blur together after awhile. You know like the Charlie Brown teacher?

All these things hurt, and they hurt very bad. It is not will I have pain on a given day. It is how bad will I have pain on a given day. So that leaves me with the question? How do I control my pain? Pain makes me a bitch. Pain makes me slow. Pain makes me tired. Pain makes me sad. Pain makes me not me. It makes me act in ways I would never act if I was pain free. I'm a happy go lucky hippy. I love everyone. I write poetry. I'm hyper, love to cook. I'm always making crafts, and I always have this positive out look. Yes despite having a chronic illness this is how I'm. I'm the funny girl. Always cutting a joke. Making you laugh. In pain I'm a pist off bitch. Ready to snap at the least little thing. I can't take a joke let alone make one. Chores are mountain to me. I feel like they will never get done, and I'm not thrilled to do them as I'm tired! Also in pain!

When in pain things that are little are big. Quiet, loud. Kids only mildly annoying, feel like they have been whining for a century. I have zero tolerance, and instantly all family members others than my hubby are bat shit crazy. Yep if they are that crazy I can run them off. Off to a far away place where things just kinda disappear. Like socks, keys, candy, money, and bacon. In pain I settle for things I would never deem appropriate otherwise. Like feeding the kids fast food, letting them stay up a little later. Things effect my body different. When I'm in pain I can here a mouse fart across the house. A simple stroke of my arm feels like you are using a cheese grater. A simple hello sounds to me like HHHHEEEELLLLOOOO!!!! Most smells send me puking like a crazy pregnant lady. Lights suck, sounds suck, and even my ever beloved heavy metal music might be to much. I dislike talking on the phone, and dread going in public. Then I feel bad for doing none of the above. My mental me, and physical me rarely jive anymore.

So pain doesn't work for me. Not only does it physically hurt. It takes away my time from my family. It cost me money. It causes me stress, and anxiety. It causes my family stress,  and well it sucks! Sucks more than a cheap porno!

I have a lovely pain management doctor. Whom I'm thankful understands EDS somewhat. She was kind enough to explain to my husband how pain effects the brain, and mood. That it was not just me that pain makes pist off. Pain really does effect your mood. She suggested a few journal articles that he read. That helped allot. For him to know that pain was 'playing with my mind'. Not just me flipping out, and being a bitch just because I felt it was a cool thing to do.

Having EDS, and a good doctor I have choices on my pain management therapy, and I'm very thankful. I'm glad that she listens to me about what works, an what does not. Like she doesn't assume PT will make it all better. I know there is a time, and a place for PT, but for pain management? No. Injury? Maybe? She tells me I don't utilize my medication enough, like I should. This is what worries me. I told her once that I worried I would become addicted to the pills. She then informed me that I was no where near habit forming level. I'm not taking near the amount of pills for it to even be of an concern. I'm not on a high enough narcotic at this point for it to be of a concern. Out of all her patients I was at the bottom of her concern. As I just don't take that many pills. In fact she gets after me to take more pills. That I shouldn't sit around in pain. Who am I trying to prove things to?

I'm not Superwomen. Why should I keep trying to be? To prove things to. Pills, and me have a hard time. I take the pills they relieve my pain. I get more done. I'm not a bitch. I can play with my kids. I can cook. I can clean. I can sleep. You would think it would be a no brainer right? So why do I struggle so much? Yet each time I'm in pain it's a viscous cycle? Why? Well that is probably a question I have come to as close to answering as where all lost socks go? Or why kids eat boogers? Or what are cartoonist thinking (or smoking) when they write modern day cartoons? Who thinks up words? hmmmmmmm

So you think if I fashioned wearing a cape it would help?

Tuesday, April 17, 2012

Under Pressure, And Where Did My Whaaa Go? Wait I Forgot.

When you are sick you are under pressure in many different ways. Always. To feel better. To do better. To not hurt so much. To remember shit. To take your pills. To get out of bed, and live a little. The many doctor appts. Physical theraphy. Oh don't forget eating. Showering, and shopping. Get the kids to school on time. Even when you feel like death warmed over, when your BP is so low the cuff won't read it. Hungry kids. When you are sick these things can be a chore. So you feel this presure to do them a certain way. At a certain time. Or that you are not doing them good enough for your family.

You feel like you are a major failure. Just because we don't work don't, mean we don't work. Man we work!!! Fighting the damn demons within us is work! Somedays taking a shower feels to me same as a full days work to my husband. Fighting my pride that I don't feel like a worthless douche all day is work. Advocating for my own rare illness because even my own doctors don't understand it is work. Trying to make my family understand, and accept my illness is very HARD work. Then of course I do have kids.........Try that with a migraine while vomiting. Still that pressure is there to take care of them babies. Mama always comes last.

Pressure. I feel pressure. Pressure to be who I can't be sometimes. To do what I can't do. To be what I used to be. To try, and do things physically I can't do anymore. I try like hell though, and baby do I pay for it later. Pressure to be a good Mama to my kids. To always cook a good meal. Have a clean house. Why? Because that was how I used to be, and it's hard to let go of the old me. It's hard to not be a normal functional wife, Mama, and member or society. I want to be able to do what I want. When I want. How I want.

I feel pressure to look a certain way when you are here. To say certain things. To do certain things. To not act sick. To fake being well. Or you will think poorly of me. Especially friends, and family I don't see much. I feel that you won't understand that I may need to rest, and that I can't no longer cook for you. To visit with you like I used to. That if my house is not perfectly clean you will judge me because it was always spotless before I got so sick. That if my kids are not dressed in their Sunday Best you will judge me. I feel this pressure you see. I beat myself up that I don't visit much when car rides are hard on me. They hurt my back, and they cause my feet/legs to go numb. I feel pressure to come visit. Even though it will hurt me.Even though sleeping in a weird bed also hurts me, and I'm away from my dr's that makes me nervous. With 2 rare disorders it's hard to be away from "your" dr. You see I feel this pressure when you come visit. Or even when you call.

I feel this presure to try, and hang on to that little part of me that is still me. Even though I know I can't I try to do it anyway. Because others can't accpet I'm not the same anymore. I feel presure to try and be who I used to be. How can I remember to pay bills, take my medications, and dr appts when I can't remember how to do simple math sometimes? I have to count on my fingers. I fill this pressure that others want me to be a least a little normal. This presure caues my BP to go up, my head to spin, and migraines. I hate that I'm not who I used to be. It's so upsetting to forget things. It really hurts your pride. This is POTS, and this is real. We have can't remember shit so don't ask! To this day in my memory I only can site 3 telephone numbers from memory. 3!!!!!! Only becaue they people have had same numbers for years!!!!!! My long term memory fine. Short term memory is shit! Cognitive skills are sporadic. One day good, one not. I used to remember every ones phone number hunderds of them. HUNDREDS! Now only 3. When I call the kids I jumble their names up. I jumble sentences up. It pisses me off bad. I feel a pressure to keep my brain the same. I play puzzle games, and listen to music. However I'm still not the same. So TRY to understand. Please take away the pressure that I so I can better handle things! It takes allot for me to say I can't well I CAN'T there you go I CAN'T CAN'T CAN'T CAN'T anymore.

I just want to be sick sometimes. Just don't want pressure on me to be something I'm not. To be what I used to be. To be what I could be. Or what you think I should be like. I just want to be me sick, and crazy.

With a shitty short term memory.

Monday, March 12, 2012

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.

Friday, March 9, 2012

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

Friday, February 24, 2012

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.

Thursday, February 2, 2012

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!

Wednesday, February 1, 2012

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.