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?

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.

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

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

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

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

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

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

Only then will you be allowed inside my Secret Bubble.

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

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

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

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

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

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

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

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

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

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

Driving With Chronic Illness

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

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

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

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

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

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

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

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

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

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

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

The Fire Hole, EDS, and POTS

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

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

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

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

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

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

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

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

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

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

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