Wednesday, June 27, 2012
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
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?