I'm Not a Drug Seeker, I'm a Life Seeker

Oxycontin 10mg Slow release: This is what independence looks like 

If you are on pain medications, especially narcotics you probably have had it happen. You probably at some point have been called a pill seeker, a druggie, a junkie, a pill head, a stoner, a loser. Crap I have heard them all. Sadly I've heard most of these names being thrown around by doctors, and nurses. I don't judge them though. It just saddens me to the core. It saddens me that they have become so jaded. Cold, and judgmental to people like me.

Ya people like ME. People in pain. That have pain. Real life pain every day. Pain that is there when I wake up. When I go to sleep. The pain is there when I read a story to my kids. Pain when I cook them dinner. Pain when I play with them. There is pain when I make love to my husband. Pain when you see me smiling in the grocery store. Always pain. Sometimes I can hide it. Sometimes I can't. Sometimes it leaves me in bed for days. So what's a girl to do? I have a life to live. I have kids to care for. A husband I love to spend time with, and things I want to do. I never asked to be pain free. Just have a tolerable pain level. Just please make me not be a bitch so that I can live. Please? Someone? Anyone? And while you are it don't judge me for it. Don't think I only wan't to take medications to 'get high' or 'have happy pills'.

When I was diagnosed with Ehlers Danlos Syndrome one of the first things the geneticist suggested I do was address my pain. He could tell right away I was in pain, and looking over my records how could I not be? I have arthritis, bursitis, scoliosis, sacroiliitis, Migraines, and blah, blah. The list goes on. Then there are the random dislocations, and sublaxations. The biggest thing he could "see it in my eyes". So he wrote in my letter of recommendation to my PCP for pain management.

Pain Management? What is this Pain Management. When I got to the follow up with my PCP he was thrilled with the idea. He said that in the state I live in he is only allowed to write two narcotic prescriptions a year for the same diagnosis. If I need any more than that I have to go to pain management. He then informed me that he had been wanting to suggest pain management to me, but didn't know how to bring it up. My PCP is really shy. Suggestions like this don't come easy. Who knows how I might react? He then told me that he can tell by body language, and my vitals etc. That my pain has been a problem for some time. When I say I have a pain scale of a 3 it's really an 8 or so. That this is common in chronic pain. When you live so long in chronic pain you tend to forget how bad it is. In other words you build a high pain tolerance. He then told me he thinks this is the source of my fatigue. Pain makes you tired. Really doctor?

So he writes the referral, and I'm unsure. As my sister was in pain management, and those programs can be so demeaning. They drug test her. The staff was rude to her. So I was scared. This clinic my sister went to treated her like a drug addict. My doctor assured me that he would NEVER refer me to a place like that. He was right. This doctor was wonderful! She knew of EDS, and was so knowledgable in Migraines. She has been a jewel in my care. She has helped me more than anyone. She explained pain to me. How it was effecting my brain. That being in pain was effecting my mood. Yes pain was making me a bitch. And yes pain was making me tired. Yes pain played a role in effecting your blood pressure, heart rate, respirations, and even body temperature. Hmmm You don't say?

It took her a long time to get through to me about medications. To convince me that I needed a daily low dose pain reliever. She gently suggested many times. Then she finally on the last visit when my BP was high said "look you normally have low BP. Your BP is high. You are pale. You don't look good, and your being short with me. Your always chipper. YOUR IN PAIN SISTER! Now what do you say you take the meds daily? Give it a month okay? Come back, and see me. If It don't work we can find something else. TRY IT ONE MONTH DOCTORS ORDERS!" She then patted me on the back, and assured my I was no drug addict! I was far from one. That I was on a very low dose. Far from the highest dose. That I don't take near the pills she ever would be concerned for dependency. In fact I under medicate at times. I let my pain get out of control at times. She told me that if I ever felt things where getting out of hand come to her. Also if she felt things where getting out of hand she would come to me, and we would discuss options. I was not an drug addict. I was a patient in pain who needed treatment. No different than a diabetic. Pain medication is just that medication. It has risks, but many benefits when used probably. I agreed. OMG that conversation helped me so much. Finally a doctor DIDN'T think I was a pill seeker. Yet still though I left her office thinking I will show her! I don't need these pills! I can fight this on my own! I'm a rebel I know!

I was sleeping 10 hours a night. And taking a nap or 2. When I was normal I slept 6-7 hours a night. Maybe 8 on a very bad day. At this time of my life even awake I was tired. My brain always drifted. I yawned all the time. I was always tired. I dozed off all the time. I couldn't be trusted to drive more than 15-20 mins. I would fall asleep at the wheel. I was a tired mess. Always sleepy. Always wanted to go to sleep.

Week one on the meds I notice I can cook more. This is cool. My hubby noticed I'm not as short tempered. He said "I'm acting like myself again". I noticed I had this new desire to do stuff. Like it wasn't so hard to clean, and cook anymore. I wanted to go places.

Week two on the meds I noticed I was sleeping less. I no longer needed the naps. Huh this is cool. I was not dozing on the couch sitting up as much. So this week I get an idea. I change my dosing schedule. These meds are slow release 12 hour meds. So I start to take one at bedtime. With my nighttime meds. I know my CPAP is effective it's been tested. So if I'm not sleeping well, it's not that causing my fatigue. OMG this switch was ew lala! All the difference in the world! I must have been dislocating in my sleep? Maybe? Or I just had bad pain in my sleep? Whatever this worked. I noticed doing so I got my internal alarm back! I wake up at 6 or 7 every am. Then I take the second dose with mid day meds.

Week three I was convinced. Why didn't I do this sooner? Man why am I such a rebel? These meds have given me my life back! I still have bad days. But I have way more good days now! I can drive, and not fall asleep. My boys, and I took a road trip even. Just myself, and 3 boys. What a way to gain back some of my independence.

I needed it so much. I had been feeling the whole poor little me thing. So now these new meds have given me a chunk of my life back. So I can be me. Do what I do. Without help of others.

This is what independence feels like

These are elk I seen on the way. There where about 50 total. Aren't they beautiful?

You could see for miles. It was hard to go home to look at 4 walls. Pure beauty here. I did it all by myself!

I'm not a drug seeker. I'm a seeker of a life to live. I'm just a regular girl with lots of issues who has a life to live. And I will do what ever it takes it LIVE.

It's Not Vanity It's Confidence

My hair changes all the time. I can't keep it the same. The style. The color. It changes all the time. I have over 10 colors of eyeshadow in my makeup case. I change that allot too. Lipstick, and eyeliner you guessed it. I have been a blonde, a brunette, a red head, and anything in between. Including eggplant, blue, pink, fire engine red, turquoise, yellow, and once purple. I have wore my hair to my ass, to one inch all over. I've had extensions before. Sometimes I say fuck it, and wear a hat. I have allot of those too. Clothes, shoes, and jewelry? I won't talk about those! That is where the man side of me kicks in. I own 6 colors of the same style T Shirt.

Some call this vanity. I call it keeping my confidence alive. When you get sick like I have it strips so much of your independence away. You can't do so many things we once could. Most of us can't work. If you can still work your abilities are greatly reduced. We spend days in bed. Days in the house. We spend days watching others live life when all we can do is watch. We watch from a window, a video, a picture, or a computer screen. We miss out on allot of  things. Things we long to do. We deal with the rejection of doctors, friends, family, and some even rejection from their spouses or partners.

Who wouldn't that make feel ugly? We feel ugly to the core sometimes. Our bodies are failing us. Our friends are slowly stepping out. Our families are douche bags. They don't understand what happened to the 'old' us. We feel like shit that we can't be Super Mom to our kids. That we are not Sexxy Hotty to our partners. So we sit here, and ask ourselves 'what are we going to do next'? Well me being the hairdresser I was for many years knows how keeping up your appearance can make you feel good. I myself seen it a million times. I used to help people feel pretty, and handsome everyday. Now mind you pretty is different to everyone. So don't judge! Hot to one man is also different to many too. So don't judge that either. Do only what works for you. Fuck any one else. You are what you got to worry about. No one else. Why do you care about all the fucktards that shit on you all these years anyways. Make yourself happy. If its hot to you work it. Nothing is more sexy than confidence anyways.

If you want pink hair do it. If being a simple brunette makes you feel beautiful do it. If lots of makeup does it for you do it! Tattoos, piercings, and weird clothes do it! Or if you are happy in your Sunday Best do it! If you see a chick in line at the store with a 100 tattoos think twice before you say "omg that is nasty, what was she thinking?" I have many, and I'm a Suzy Homemaker as any Plain Jane. I also have many friends with full sleeves, and many piercings. We don't do drugs. Or party. We have play dates, and BBQ's all that normal shit. We are just artsy fartsy, and a little weird. Listen to different music. Same goes for a Plain Jane. Don't judge her either. My best friend thinks women are so hot plain. He is turned off my allot of hair color, and make up. I know some full blown crack heads go to church every Sunday. Wear a dress looking all whatever. You never know. Looks can deceive! So worry about you, and what makes you happy.

Don't judge a women's weight. Some people like thick women. I know several. Some men like thin women. So women like big women. Who are we to judge what gets others all excited in the bedroom?  I know what excites me, and mine. I don't have the brain cells to worry how others get their slaps, and tickles off. So what? If you are happy. Cool. Don't push your views on others. Never assume that everyone has to be just like you. It takes a allot people make this world go round. If it was all meant to be the same we would all be the same color, act all the same, and there wouldn't be different cilments. Foods, illnesses, books, or cool blogs like mine to follow.

So do what ever makes you feel better. To feel pretty. To feel handsome, whatever. It will keep the depression at bay.  Don't let illness take away everything! And think twice about saying mean shit about ones looks! Think about farting rainbows, and kitties.

It's not vanity. It's looking after yourself.

Finding Good In The Bad

My Dad was a alcoholic. He died when I was 12. When he drank he did some pretty mean shit. To my Mother, and to us kids. When he got drunk he got mean as shit. My poor mother got the most of his rage. Not only did he abuse her at times he was also unfaithful, and verbally abusive. He would also turn this rage on us kids sometimes.

My Dad was a clean freak. He liked everything spotless. Not only spotless he liked things to be a certain way. So if they where not a certain way he got mad as hell. When they where not a certain way, and he was drunk he went nuts. He once dumped all my dresser drawers. Then made me refold all my clothes because they where not lined up nice, and in a straight stack. He wanted them all stacked neat, and in rows. Shirts in one drawer, panties, shorts in another. All stacked neat. I did it. I was liked 9 or so. I did it to shut him up. Cabinets in the kitchen had to be all neat, and lined up. Like a grocery store. No dishes in the sink.

I won't share to much more. Why? I don't remember to much more. Well when someone lives a life like this they learn to block things out. The bad shit. It's a way to survive. If I walked around remembering all the bad shit that went down, then I would just repeat the cycle. I had no desire to live a life like that. To treat my kids like that. To marry a man like that. To treat my husband like my Dad treated my Mom. I wanted better. So many days lost. Weeks. Birthdays. Holidays.Years. Memories gone.

It is for the best. I have built walls to survive. It is how I can stay happy. It is how I'm not an alcoholic myself. How I know I cant be a dick to my kids. How I know that  they need to be hugged often, and told they are loved. That they are pretty, handsome, smart, and that I believe in them. That they can come to me if they need me. That  they can make mistakes, and I will still love them. Sure I get mad. But abuse? No. Never.

I would be a liar to say my Dad was a dick all the time. He had some good in him. He was a good person. The problem is when he drank he become mean. The last years of his life he drank almost everyday so you guessed how much he was mean. Often. Sober he was nice, and fun. Of was he an all right dude. I used to sit an wish the liquor store would just be closed. So that he couldn't buy beer. If he didn't have beer then he would't be an asshole. If he couldn't get drunk then he wouldn't be mean. Then he would probably cook us a big nice dinner, and for just a few minutes feel sorta kinda like a family.

He had such good taste in music. He would turn it up loud, and sing to it. That is a good memory I have. He would play it, and cook. Cook, and sing. Usually classic rock or the Blues. He always played it in the car. He would play it loud when we all cleaned house. He told us "music makes the cleaning easier". I find myself doing that to this day. I also cannot drive without music. I listen to music, and cook. Just like he did. I find myself even listening to the same songs sometimes. When I listen to certain songs they bring back memories of my Dad. He is happy in the memory. So am I.

There was also this one time in the snow. He pulled us around on a tire behind his truck.  Around the town square. The cops yelled at him he just kept going. My hands got so cold, but when we got home he made us all hot cocoa. He wasn't an asshole that day............
You just have to find good in the bad.

Otherwise you would go mad..........

He loved this song. Sing it loud baby!

Hi there! Please visit my new site!

Hi all. I see this blog is still getting about 20 views a day. So I want to remind you all to come visit my new self hosted site. My own website is full of my latest blog posts, and my own creative photography  You will even find some cooking recipes, and tips. Hope to see you there! Please visit me at http://illnesssucksfindfunny.com/  See ya all soon!

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. www.illnesssuckfindfunny.com 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!

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.

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."