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......

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. ;)


*****STEPS OF SOAP BOX*****

A 1 Handed Biotch Again Strokes Are No Fun

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

Somehow I made a full recovery.

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

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

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

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


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

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

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

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

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

To 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.