My Pets

My pets are one of the few things that make me smile. Ordinarily, I'm a cat lover. Growing up, I had two households (my dad & stepmom's house, in NJ and my mom & stepdad's house in PA). I lived primarily with my dad, and stepmom, and visited my mom & stepdad on weekends and during school vacations. At my dad's we had a strict "no mammal" pet policy. My dad maintained a fish aquarium, and my stepmom has two parrots (one Amazon , name Rocky, and a Goffin Cockatoo, named Noel). While the parrots can be amusing, only my stepmom can actually handle Rocky, and Noel is a bit neurotic. Neither of them provided me, with any companionship. At my mom's we always had a ton of cats, outside dogs, and various small critters, over the years (guinea pigs, lizards, parakeets and rabbit). I was especially attached to three cats, whom I grew up with, Nusy, Gizmo and Mitzoo. My mother had Nusy, every since I was a baby. We got Gizmo when I was around four, and Mitzoo when I was about seven. I was most attached to Gizmo, who lived the longest (she died shortly after I began going to college), and I spent the most time with. She was super lovable, affectionate and sweet. Even as an old cat, she had the cutest high pitch mew, that sounded just like a kitten.

I love dogs, but I've always preferred cats. As an adult, most of my boyfriends had dogs, and both my little sisters, and brother each had dogs. I've been around them nearly my whole life, love playing with them, and being around them, just never owned one of my own, until recently. I'm an animal lover, in general, and like all kinds of little critters. I especially love little, fury mammals. I enjoyed playing with my guinea pigs, at my mom's when I was young, and always felt I was missing something, not having a pet of my own, at my dad's. It wasn't until I was almost finished with college, that I managed to convince my dad, to let me break the "no mammal" rule, and bring home a pet. I adopted a chinchilla, who I named Tskushi (after an anime character), from my mentor, Mr. Grace. He had been my high school art teacher, and mentor for my junior filed work, and student teaching. When I found out he had experience breeding chinchillas, and had a few up for adoption, I just HAD to have one. At first I convinced my boyfriend at the time, to let me keep her at his place, but later moved her home, to my parents house. I thought my dad would pitch a fit, but instead he fell in love her, and played with her, and enjoyed her company, just as much as I did. In fact, when I first brought up the idea of moving out, he asked if I wouldn't mind leaving Tskushi behind, because he'd grown so attached to her.

When I moved out and got my first apartment, one of the most exciting aspects to my new found freedom, and independence was getting my own cat. I adopted a pretty, little grey and white cat, from my grandparents. They had inherited her from a friend, who had initially just asked them to watch her temporarily. They already had two other cats, and I felt like they were struggling to care for them, so I offered to take "Tinkerbell" who I later changed her name to Bella. I moved into my first place in April, 2005 (precisely six years ago, today). I only got to enjoy living in my apartment, and with Bella, for two months, before my injury. Even though our time together was short lived, I quickly fell in love with her, and really enjoyed her company. She had a big personality, and demanded a lot of attention, which I kind of liked. She's was super chatty, and would meow my ear off, as soon as I got home from work, every day.

The funny thing was, I didn't realize that she was pregnant when I adopted her (she was only around seven months old, had a small frame, and had been an indoor cat). Both her, and my grandparents' other cat, were not neutered, and had apparently conceived a kitten, just before I took her. Three weeks before my accident, I came home to a big surprise. I had just finished bar tending school (I had lined up a bar tending job for summer employment), and came home late that night. I opened the door to my apartment, and Bella greeted me, as usual, meowing away, about who knows what, when out of her little cubbyhole, crawls out a small, grey thing. At first, I was shocked, and thought maybe she's somehow caught a mouse. I crouched down, to get a better look, and realized it was a kitten! Immediately, I called my boyfriend (who was already on his way over) and started freaking out, and frantically searching my apartment for the rest of the litter. We searched high and low, and found no signs of any other kittens. I thought that was bizarre, and called an emergency vetinary hotline, to get advice. They told me, it could take hours, in between labor, and to stay up with her, and monitor her through the night. By the next morning, we still only had one, small grey kitten, so we took mother, and daughter to the vet to get examined. They took some xrays and determined that Bella had an abnormally small "litter", of one, most likely due to the fact that she and the father cat, were both very young in age. I was pleased, that they were both healthy, and decided to keep the new addition to the family. We named her Rosa (the initial choice was "Axel"-based of the lead singer from Guns'n'Roses-but given the fact we found out she was a girl, we came up with a compromise). Rosa had just opened her eyes, and had begun running around when I got hurt. When my apartment got closed down, my best friend Erin adopted them both. Now Erin, and her husband have Rosa, and my grandparents have Bella. I've had the chance to "cat sit" for them, various times, throughout the past six years.

After my accident, I spent a year and a half living in a nursing home. In January 2007, I got myself out, and into an apartment of my own. For the first year living here, I lived with a roommate. Steve and I had been high school classmates, and had got back in touch, shortly before my accident. He really helped me out, by agreeing to room with me. Although I have no functional mobility, the state only provides me with eight hours of having a home health aide, per day. It was crucial for me to have a roommate, to have the safety, and security, of having someone here at night, in case of emergency. Steve and I got along well, and I enjoyed our time living together. As an added bonus, Steve brought along his cat Maynerd (aka Manny) to keep us company. I really enjoyed having Manny around, especially during the day, when I was alone in the apartment by myself.

After living here for about a year, Steve and his girlfriend (now wife) decided they wanted to get a place of their own. I had a new roommate lined up, but he backed out at the last minute, leaving me in a tight spot. I asked my sister Kati, if she wouldn't mind coming to stay with me for a while. She agreed, and moved in with her dog Precious, who I knew, since before my accident. Precious is a golden retriever, cocker spaniel, corgy mixed breed. She's super affection, lovable, mild mannered and very well behaved. Having her here has been really great. She's super loyal, and loves to keep me company. She often lays near my wheelchair, or beside my bed. Everyone that meets her, just loves her.

Once Manny had left, I felt like I really missed having a cat. I discussed the idea of getting one, with Kati, and my mom, and they both agreed they'd be willing to help me take care of one. We adopted Tommy, around Halloween, 2008. I had searched for a while, online and ended up finding him through his foster family. Since we already had Precious, it was important for me to adopt a "dog friendly" cat. Tommy is just that! In fact, we think he thinks he IS a dog. He plays well with dogs, is EXTREMELY outgoing, curious & smart. He even wears a harness & takes walks with the dogs (I'm serious).

Tommy is a little too smart! He can open all of the doors in my apartment, so we had to change my doorknob from a lever, to a round knob. When I first got him, I had an environmental control unit, that I could control, by tapping a button, on my pillow, with my head & give verbal commands. If I needed help, I'd tap the button, and say "get Steve", which would in turn, sound an alarm in Steve's room (now my sister's room). For some reason, instead of just pouncing on my sister, and waking her up, he'd come barreling into my MY room, meowing for food, at 5 or 6 am. Then, I'd sound the alarm, and he'd go charging off, towards the second bedroom. The routine got old, fast, and I opted for the different knob, which he's since given up trying. He will on occassion bust into the bathroom, on guests, if they forget to lock the door. He's one of a kind (my family has owned many, many cats). He got very attached to my mom (who plays with, walks, & feeds him), and could care less about me. He is catlike in the one aspect, that he requires a 50/50 relationship. I can't offer him much, so he's not interested in me. That's the main reason I got Naama.

Naama is my very first dog. She is a Miniature Pinscher, with a BIG personality! I always thought if I were to get a dog, I'd want a small, short hair breed. Being a cat person, I like the idea of being able to carry my pet, and be able to have my pet on my lap, and in bed with me. She was a spur of the moment purchase. A friend of mine, who I met online (playing Maple Story) had come to visit. We took her to see my art exhibit, and then to a local mall, to my favorite restaurant chain, the Rainforest Cafe. We made the mistake (in a good way) to stop in the pet store on the way out & I fell in love with Naama. I'd always wanted a mini-pin & really wanted the companionship. I named her after my friend, Naama. She's the best thing (being) I ever bought. She's super cute & sassy. She makes me laugh. She's super spoiled, and she knows it! She's definitely got a "diva" complex, and can at times, be a total drama queen! She's the closest thing I have to a child, and I love buying her cute little outfits to wear. She's got quite a wardrobe, and I get a kick out of seeing her prance around, in her clothes. She's been great for Tommy, and they play well together. They can both get pretty hyper, and Precious is too old to be bothered. Tommy and Naama make good playmates and I just love watching the two of them interact. Having pets has definitely been a spirit lifting experience for me. They can make me smile, even on my worst ways. I'm truly thankful for their love and companionship.

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Paralyzed Without Joy

An online friend of mine Laurie, recently asked me if I'd read any blog postings, by a woman named Heather, who writes a blog called "Paralyzed With Joy!" Heather had left a comment, on one of my previous posts. I saw the comment that she sent to me, and have to be honest, in that I wrote her off as a religious fanatic, and never visited her blog (until the other day, when Laurie brought it up). I'm ashamed to admit that, because it sounds presumptions and rude of me, and that's not usually how I am. It's wrong of me to judge her for saying that she's "joyful," just like I feel it's wrong for people to judge me, and expect me to be happy. Her comment just rubbed me the wrong way, because I disagree with the notion that "God did this to me." I take full responsibility for my mistake. Perhaps, it's because she was injured, through someone else, slamming into her car, breaking her neck. She wasn't at fault, and I'm guessing finds comfort, in the line of thinking that it all happened as part of "God's plan." I stupidly dove into a shallow pool. My foolish mistake cost me my health, and the life I loved. Although, I didn't intentionally dive, to harm myself, and there were many variables in play, it's my actions that ultimately caused my injury. God didn't push me into the pool, nor do I believe (if such a being exists) he/she/it/they planned this life for me. I don't believe in destiny, or predetermined futures.

I know she didn't intend to offend me, no one ever does, when dishing out religious counseling, or offering up scripture. It's just hard, for me, as a skeptic, and often cynic, to accept. While I am grateful for any feedback I get, it is hard for me to accept, when it's coming from a religious perspective. She's not the first to offer up words of "divine wisdom," nor will she be the last. Though appreciated, I take every word of advice with a grain of salt, because no one but me, has to live in my shoes, and knows my suffering, better than me. As far as religion goes, no one can offer up proof, that their beliefs are truth, you either believe it, or you don't. Personally, I have a hard time believing in a God that would WANT THIS life for me.

Laurie and I met through Facebook. She has MS, and got to know me, by reading my blogs. One day, she decided to write to via Facebook, and shared some of her story with me. Although there is a generation gap between us, we share a lot of interests in common. She was also a teacher. We've been writing emails back and forth for some time now, discussing all sorts of things, like languages, movies, pets, religion, family, friends, and our personal struggles, dealing with our disabilities and adapting to life with paralysis. Right now Laurie still has much more functional movement than me, but is continuingly having to adapt to her degenerative disease. I often wonder if it would've made it any easier on me, if I'd gradually lost my abilities, versus losing everything over night. Either way, paralysis sucks, and we both struggle to find answers for "Why us?" and searching for reasons to keep moving forward, despite it all. It helps having a kindred spirit, to talk to, even if you're each having a rough day. Although it makes me sad to know other people are effected by paralysis, it helps having others to turn to, that know what it's like to need help, and having lost independence. It especially helps having someone to talk to that is like minded, and shares a similar perspective, and attitude, towards THIS lifestyle.

Laurie is like me, in that she is disatified with compromise, and hates the ever growing number of limitations that paralysis has forced upon her. We are both very unhappy with the indignities of paralysis, and would most certainly never describe living with such lack of freedom, and forced dependence as "joyful." The mere name of Heather's blog irritates me. How anyone could possibly be "paralyzed with joy" is beyond me. I can't help but think she's insane, for saying things like "On a scale of one to ten (ten being the most satisfied with life) she is a ten" or six years post spinal cord injury, she's "the happiest she's ever been." On one hand, I want to slap myself, for being so critical, and judgmental. Clearly, I don't know anything about this woman, besides the fact that she is paralyzed, and apparently happy. Who am I to say she should, or shouldn't be happy, just because I have such a hard time coping with the changes in my own life, and hate every aspect of being paralyzed? On the other hand, a part of me is even jealous, that someone in a similar condition to me, could be so happy, when I'm so miserable. I know the secret to her happiness, and understand how it gives her such a rosy perspective on life. The source of her happiness, is something I wish I had, but can't force upon myself, and that is blind faith. I've seen it many, times; people like her, and Joni Erickson Tada, that despite their paralysis, they're able to be happy, and draw strength from God (specifically Jesus, in both of these cases).

I struggle with having faith in any God, let alone any one specific God. Although my accident has stirred up fears about God, and an afterlife, it hasn't helped me make any breakthroughs, or have any great epiphanies. On the contrary, it has put more, and more doubt, in my mind about God, and his/her/it/their supposed interest and/or love for me. As for being joyfully paralyzed, I see that as being a product of her convictions to God, not how extraordinary her life is. Let's face it, no matter how you dice it, paralysis sucks. It is a struggle, living with paralysis every day. I don't believe for a minute that any sane individual would choose to be paralyzed, over being healthy. Paralysis might have opened her eyes, and fostered in her a new appreciation for life, or feelings of being given a "second chance", after coming so close to death, but I guarantee she'd prefer being able to care for herself, over the life she has now. It is her belief in God, that gives her the ability to see purpose and meaning, in her suffering, and that gives her joy, despite being paralyzed.

I wish I could say the same for myself, but I can't. My belief in God is shaky, at best. I tend to lean towards Eastern philosophy, and feel turned off by Christianity. Some of my resistance to Christianity is my own, logical analytical nature, and my finding it hard to believe in a God, that would be as petty, jealous, or harsh, as the God of the Old Testament, and my historical knowledge of how Christianity formed, and how man has corrupted, and influenced all organized religions, in general. Growing up Catholic, the church, and it's rituals always seemed suffocating to me. The mere notion that Jesus is the ONLY path to "salvation" has always pushed me away. I just can't believe in a God that would eternally damn good people, just because they worshiped him/her/it/they by a different name. Logically, I don't even understand the huge rift, between Muslims, Christians, and Jews, given the fact that all worship the same God, and believe in the same prophets. Despite their common roots, and belief systems, people use "God's" name to promote their own selfish, man made agendas, and divide humanity. The more I have learned over time, the less I have come to believe, except for one unifying moral, to love oneself and my fellow man. It's the one idea that makes sense, and stands up to the test of time, throughout all religions, and faiths.

I think of having a strong faith in God, can be as equally powerful as ignorance. Ignorance is bliss. Blind faith is like that, in many ways. No matter how outlandish, or unscientific something is, people with faith believe. Faith is blind, and unquestioning. It also lets people be "blind" to the realities of life, and helps paint a silver lining on everything. At times, that blind aspect of faith can be bad, because it can be used as weapon, to make people do, and say things that hurt others, in the name of "God", or accept situations, no matter how horrible they are. I don't think God (if he/she/it/they exists) would've bothered giving us logic, and reason, if he/she/it/they, didn't want us to sometimes use those abilities to evaluate situations for what they are, and think critically, for ourselves. Likewise, if God gave us freewill, then I believe he/she/it/they is solely an observer, of our lives, and doesn't often intervene (if not, at all). I don't think God "gives" us a bad, or good lot in life. I think we get what we make of it. However, that also means I don't buy into the BS that, "God only gives us what we can handle" and "everything happens for a reason." I think sometimes bad things just happen, and they most certainly are too much for any one person to handle. I many respects, I hate myself, for making the stupid mistake, that paralyzed me. On the other hand, I love myself, enough to feel like living with paralysis, is cruel, and unusual punishment. In my case, my punishment VASTLY outweighs, my mistakes, and I don't think it's wrong for me to be upset about, or not want to have to live the way paralysis has forced me to. If God is watching, he/she/it/they knows how hard my life is, and how much I'm suffering, and I don't think it's fair, or just, for anyone else to judge, either way.

It pisses me off, when people down play their paralysis, because I feel like it's crucial for the average person to understand how hard it is, to live this way. I mean, if life's so grand, why bother finding a cure? I believe the key to gaining support for research, is by touching people's minds and hearts, on a personal level, by putting faces, names, and stories, to the word "paralysis." I believe that every person I touch, by sharing my story, and sharing my pain, is one more person that's aware of possibility that his/her life could change; one more person who cares about finding a cure; and one more person that can better appreciate the health, and abilities he/she still has. Yes, maybe if I had a stronger faith in God, this would all be a bit easier to handle, but that wouldn't diminish the fact that I'm dependent on others, sick and in pain. I don't want people to forget, or overlook the realities of living with paralysis. It's not ok, having to have a bowel program, a catheter, needing to be fed, bathed, and clothed. God, or no God, those are REAL, tangible things, that I'm FORCED to face, every day. Paralysis doesn't give me an option, and I don't get a break. I have to deal with all of that stuff, plus all that I lost, plus the sickness, every second, of every day. Does that mean I never have a joyful moment, or have anything I'm grateful for, of course not. However, reality is that living with paralysis sucks, and I'd give ANYTHING (besides my soul- ironic, I know) to just be healthy again.

I'm skeptical of anyone who says they're "happy" with living with paralysis. Laurie is Jewish, and like I said, I was raised Catholic. Neither of us is very "religious", nor do we blame God for our paralysis. It would be very easy, to put the blame on God, since after all, if such a being exists, and created the universe, space, and time, he/she/it/they could certainly fix something as simple some faulty nerve connections. We both take a more logical, fact based approach to life, and chalk our situations up to bad luck, not some divine plan. Rationally, it's hard to accept that anyone would be thankful, to be paralyzed. It seems against human nature, to WANT, or prefer to be dependent on others, and have a constant invasion of privacy, and personal space. The fact of the matter is, paralysis strips people of freedom, and forces a tremendous amount of change into one's life.

Most people would not want to live this way, by choice. It's not to say, that I don't believe people can find things to make them happy, and give them purpose, despite paralysis. I believe each individual's case is unique, and factors like religious beliefs, level of education, career, financial status, personality, support network, and level of independence before paralysis, play a HUGE role, in how "happy" a person can be, living with paralysis. You can't miss, what you never had, and some people lose a tremendous amount more than others. Suffering should be evaluated on a case, by case basis. Just because one person can find "joy" living with paralysis, that doesn't mean everyone can. I think each individual has the capability, and right, to asses their own level of suffering, versus amount of enjoyment. I don't think everyone can find balance, or the extreme opposite, happiness.

Naturally, Heather is entitled to her line of thinking, and in many respects is lucky, to be able view life, in the manner she does. I think that everyone has their own desires, standards, and threshold for what they can tolerate, and that living with paralysis should not be forced upon people, without escape, in the manner that it is. Living this way, for me, and others like me (Laurie for example) find living with paralysis closer to Hell, than to Heaven. I don't think that makes us weak, or wrong, just as it doesn't necessarily mean extraordinary people like Heather, Christopher Reeve, Joni Erickson Tada, and Dr. Dan Gottlieb, as being "better," or stronger, it just means we're all unique. Life is not like a cookie cutting machine, where one size fits all can apply. I think each person has the right to determine what he/she considers to be quality.

I realize that not everyone agrees with that philosophy, but personally, I feel like in certain situations it is justified, not wanting to live (aka- prolong suffering). For example, I don't want to ever live dependent on a vent. I have been on a vent before, and would prefer death, over ever having to go on one again. I realize that there are people out there that live dependent on vents, that feel happy, and fulfilled. Does that make them superior people? I think it just makes them different. I think everyone should have (and do, to a certain extent- through advanced directives and living wills) the right to determine what they consider to be quality. After all, it's very easy to hand out advice, when you're not the one having to live through it. Some people would disagree, and say that people should go to any lengths possible to extend life, like people hooked up to machines, despite being in a vegetative state (such as the Teri Shiavo case) . I realize this is a hot button issue, that people feel strongly about. I'm merely stating my own personal opinion, given my life experiences.

I personally feel as though I'm at a point of living with paralysis (C4/C5 complete injury), where I feel as though living, is only prolonging my own suffering. I battle myself every day, to keep pushing forward. The thing is, I feel as though my life is being sustained by unnatural means. If I truly left my life "in God's hands", I'd be dead a long time ago, because I have no ability to fend for myself. I'm kept alive by people, medication, and awful treatments (suprapubic catheter & bowel regime). I'm only alive because our society has the means necessary to provide me with all the services and things I need. However, there comes a point (right now, in my case) where one must evaulate if the ends justifies the means. I definitely can not say that I'm "paralyzed with joy." I feel more like a prisoner, than anything, and want nothing more than my healthy body back. I hate being dependent on others, and being chronically sick. I'm glad for people like Heather, in that I don't take pleasure in hearing about other's suffering. It's nice for her, that she is happy, but I can't imagine ever finding that level of enjoyment, or contentment, with having to live with so much pain, and compromise.

"Paralyzed With Joy!" - http://paralyzedwithjoy.blogspot.com/



- Posted using BlogPress from my iPad

IBS & SCI

I had a long conversation with my friend Mariam the other night. She's a fellow AMFPA artist and quadriplegic (I hate that description), like me. This month marked fifteen years, since her accident. She lives on her own, in Chicago. She's an amazing artist, and has a wonderfully positive attitude about life, and dealing with living with paralysis. Although she's admitted to me that she's had her fair share of dark days, and moments of feeling like she wanted to give up on life, she lived through that rough period of her life to tell the tale, and has been trying to help me see the possibility of finding happiness, despite our injuries. We share a lot in common, and I really appreciate her insight, and her taking time to try and cheer me up.

Just like I feel it's impossible for most of my friends to see the world through the lens, and perspective on life, that paralysis has given me, it's near impossible for me to see (or imagine) my life through Mariam's eyes. I have a couple friends (including Mariam) that have been injured over a decade, and it's hard for me to wrap my head around that amount of time, living this way. When I think about the Hell these last six (almost) years have been, and my deteriorating health, my mind begins to short circuit, at the thought of having to go through this for another six, or ten years. I get chocked up, just at the thought. It's a very scary, hopeless filled future, through my eyes, at this point in my journey, right now.

Mariam said she went through a similar extremely dark period in her life, where she gave up caring. She said her poor health was a big contributing factor to her mood, and both fed off of one another, in a viscous downward spiral. I feel caught in the current of a similar cycle. It's very hard to envision any brightness in a future, that is certain to include more of the same stuff that I've been going through, and will continue to go through, unless miraculously cured. No matter how you slice it, bowel programs, catheters, lack of privacy and being dependent on others, is part of my future. Those are all inevitables, I can't escape.

Mariam agrees with me, that bowel program is a horrendous aspect of living with paralysis, that we need. However, she said that there might be ways of "streamlining" my program, so that it's not SUCH a burden. She and I discussed our routines, and I was kind of shocked by the comparisons. I have my BP every other day (in the morning). It usually lasts two hours, or more, and entails me sitting strapped to a commode, over the toilet. I have a nurse present, the entire time, who uses a suppository and manual stimulation, every ten to twenty minutes, until I'm "empty" (disgusting, gross & disturbing, I know). On top of that, I take five Senekot and two Colace pills each day. Not to mention, trying watch my diet and eat plenty of veggies and fiber. Despite all that, I still have occasional "accidents", which are terribly traumatic, and usually unexplained. I have at least one a month. Occasionally (like last week) I'll have a BP day with near to no "results" and end up then having to have BP for three days, back to back, as to not mess up my nursing schedule. In contrast, Mariam was telling me, her BP only takes 45 minutes, every THREE days.

I've gotten quite a lot of feedback from other people that have BP, and routines seem to vary widely, from individual, to individual. I've had more than one person respond to my posts (in Care Cure forums), with their own horror stories of three hour BPs, hemorrhoids and the alternative of trading it all in for a colostomy. As I've said a million times, I'm not willing to entertain the colostomy bag option. Knowing the Hell I currently go through, and how my body reacts, I also can't envision being able to get away with only having BP every three days, like Mariam. Although it sounds like a WONDERFUL alternative, to my current routine (the best idea I've heard), I honestly don't think my body could tolerate waiting that long to "go." As it is, I experience a lot of extra AD like symptoms the night before BP. I attribute the discomfort (chills, fevers, chest pressure and sweating) with gas, and with needing to go to the bathroom. I've tried taking Beano & Gas-X, on hopes of alleviating some of the discomfort, but it never does. Not to mention, the days my BP doesn't produce the "typical" amount of stool (OMG! I want to vomit, just typing this), I almost always end up having an accident, which to me, is further proof that's there's just no way my body would let me get away putting BP off, an extra day. In fact, it's been suggested to me by several people, that I ought to go back to having BP every day (like when I was living in the nursing home). I definitely had less instances of incontinence, when I was having BP daily. However, I'm at a point where I literally rather die, than go back to having BP daily.

Mariam said that she thought it's a possibility that the nurses working with me, aren't being aggressive enough, in their techniques. She and I talked at length about this, and she explained to me about having two sphincters, and the importance of the nurses putting the suppositories "up," high enough and how crucial the stimulation process is. To be honest, it was a bit too detailed of an anatomy lesson for me, and I admitted that I try to be the least involved in the whole BP process, as I can, given the fact it's my own body. Normally during BP, I try to pay attention to the news, and distract myself from the ugly realities of my life. I love it when I know I'll have a nurse with me that knows me well, because it means I can be relaxed enough, to NOT have to discuss anything about the actual BP, or give instructions. When I'm with a nurse that I'm familiar with, I basically just let them "do what they need to do" and I zone out, and try and remove my thoughts from my surroundings.

Taking Mariam's advice (knowing deep down that I need to be control and directing my care), I decided to bring up some of our discussion with my nurse, to make sure she is in fact doing everything correctly (which I was pretty sure she was). She acknowledged all of the important points, and said she'd be more than happy to try her best to speed things along. The thing is, there's often times when my nurses (including the nurse I spoke with) have told me that they've been "up there," and couldn't feel a thing. Then later that same day, I'll end up going more. So basically what MY nurses have to do, is determine when I'm "done" based on quantity, and not only just by what they feel. Sometimes they'll even have to use a second suppository to "get things moving." When it's all said and done, I never feel comfortable (meaning, not being paranoid about having an accident) unless I've gone a certain amount. It ends up being a waiting game. The nurses keep checking, and stimulating, until I "go" that certain amount. It's awful. Regardless, I'm usually always paranoid of accidents. Partly because they have happened randomly, even after a "good" BP, and secondly, because the threat is always there, and the trauma of it happening once, has been enough to keep me forever worried. It's pretty much become my worst fear, that I fear on an almost constant basis.

Before my accident, when I was around twenty, or twenty one, my mother had a scare, thinking she might have Chrone's disease. She ended up having a colonoscopy done, and was diagnosed with IBS (irritable bowel syndrome- aka spastic colon). I had always had bathroom issues myself, often suffering from diarrhea and almost always getting sick, if I was anxious, or upset about something. I decided to get myself checked out, around the same time, and was also diagnosed with IBS. I was given pills, that didn't help, and I stopped taking them. I never found any direct relation to food, or drink, but definitely believe there were psychological triggers. I can remember being sick to my stomach (with the runs) for every major event in my life. Not being unable to use public restrooms, and being highly sensitive about the matter, complicated having spastic colon, and I remember many days that I was doubled over in pain, because I HAD to "go," but couldn't bring myself to use the bathroom, wherever, or around whoever I was with, at the time.

Between my conversation with Mariam, and with my nurse, I got to thinking if maybe it's not so much my hemorrhoids that cause me so much discomfort, and make my bowel program seemingly so hard to manage and control, but perhaps it's the fact that I still have IBS. It's not that I've never had this thought before, but I always ruled it out, given the fact that I know my biggest trigger of my IBS, was always my emotions. I've always assumed, since there is no longer a conscious connection between my brain, and my ability to control my bowels, that IBS too, would no longer be an issue. I figured, if my emotions still ruled my IBS, then theoretically, I'd be able to use anxiety to my advantage, and will myself into needing to go. That most certainly isn't the case. I'm anxious/paranoid about BP specifically, 99% of the time, so based on that alone, I'd be "going" all the time. On the other hand, I wonder if my anxiety and IBS create more gas, and sensations of needing to go, that my body is interpreting as pain, and thus creating all the AD symptoms. It would explain a lot. I'm curious to know if anyone else with a SCI has had experience of being previously diagnosed with IBS, and if he/she has had any similar issues of AD and unexplained problems with BP and/or episodes of incontinence. I'm also curious to ask my doctor what he thinks. Unfortunately, there's no way to know for sure. One frustrating aspect of IBS, is that it's difficult to treat. It's even harder to try and treat something you can't directly feel. I'm grasping at straws, but it's an idea I'm curious I'd like to throw out there, and get some feedback on.


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"The Sea Inside"

The other day I watched a very power movie, called "The Sea Inside." It is a Spanish film, that came out in the theaters, back in 2004. The story is based on the true, life story, of a quadriplegic man named Ramon Sampedro. He was injured in a diving accident (very similar injury to my own), off a cliff, nearby his home, into the sea. After his accident, he spent nearly thirty years fighting with the Spanish government, for the right to end his own life. The movie chronicles his uphill battle against the government, in a country, which is highly influenced by Catholic church. It depicts his day to day home life with his family, and caretakers, as well as the development of friendships, with two key women. One woman, named Rosa, is a local, single mother of two, who learns about his plight, through the media coverage of his case. The second woman, is a lawyer, who is battling with a debilitating neurological disorder, and decides to help him win his case, in hopes of securing her own to die, with dignity. Both women come to know, and love him, and end up helping him, in very different ways. In the end, Ramon gets his wish, despite losing the case, for the petition, to legally end his own life. The movie is extremely well written, acted, and touched my heart, and mind on many different levels. It is a story I can completely relate to, and Ramon's view points, and philosophy on life, are very similar to my own. If he were still alive, I'm sure we could talk for hours on end, about the cruelties of paralysis, and how important the quality of life is. I think if there's a heaven, we might become good friends. I'm interested to read his book, which was published shortly before his death, and am inspired by his tenacity and courage.

One of the things that struck me most about the movie, was the interpersonal relationships, between Ramon, and his family members, and the different dynamics each of them shared. It was insightful for me, and hit very close to home, to see the pain and anguish that his family members experienced, do to his injury, and the different way each of them coped, with having to help him, and also each of their varying attitudes, towards his wish to die. An especially poignant scene, is where his ailing father, who is normally very tightlipped, and somber, says something to the effect of "it's hard enough to lose a child; it's worse to watch a child, that wants to die." It's evident how much his father has suffered, watching Ramon suffer, and the feelings of frustration, and inadiquicy that must come along, with not being able to help his son heal. He is also torn between, his two sons, who argue bitterly, over Ramon's injury, and its impact on the family, as a whole. Ramon's older brother Jose, clearly feels resentment over his brother's life, and care being a burden and strain on the family, and yet he is the one most adamantly opposed to his brother's wishes to die. I found it interesting, that although he clearly blamed his brother for having a negative impact on his life, he seemed most affraid, and hesitant to let him go. I can't help but wonder, and compare my own situation, to Ramon's and think about all the stress, tears, and suffering my accident has caused on my family. Despite their spats, it was clear that Ramon was very loved, and well cared for. In fact his sister-in-law, Manuela, serves as his primary caregiver, and doted on him, as if he were her own child.

Ramon's case became a big media blitz, and caused a bit of scandal, given the influence of the Catholic church, and it's roots, into the heritage, and history of the Spanish goverment. One point in the movie, a Catholic priest, who was also quadriplegic, decided to make it his mission, to "save" Ramon, by going to see him, and try to persuade Ramon to change his views on living life, despite paralysis, and publicly suggested that perhaps it was just that Ramon lacked love and compassion, and that his petition for the right to die, was just a cry for help. Naturally, his comments both offended, and deeply hurt his family, whom loved him very much. Like myself, Ramon felt that this life is not a quality life. He believed like me, that it is a second best, compromise of the lives we once had, that strip of us of our freedom, and dignity. He was not happy with settling for life with paralysis, and neither am I.

It is not that I (or Ramon) don't appreciative the love and compassion my family and friends have for me, but love alone is not enough, to take away the physical and emotional pain that comes along with having to live such a limiting, unnatural way of life. Wanting to die, has nothing to do with lacking love, and/or support. Ramon's family was deeply invested and involved in Ramon's overall health, and well being. He had many interested, caring friends. I too have an abundance of love, and support. I am blessed with a strong network, of family, friends, and medical staff, to support me, and provide me with the best possible care, given my condition, and my limitations. I am grateful for the love, and interest my loved ones take in helping me, and being there for me. Unfortunately, love alone, is not enough, to counter balance the physical suffering, emotional trauma, loss of indepedemce, and losing the life I once had. There is nothing, short of a miracle, and/or cure, that can give me back (some of) what I lost, and make up for all the suffering I endure. Neither is very probable, or likely to occur, within the near future (or realistically speaking, even within the next decade.) I understand Ramon's wish to die, and respect his decision.

Its not to say I think all quadriplegics should die, or that their lives aren't worth living. I can only talk for myself, as did Ramon. He was not satisfied with having to endure the indignities that we're forced to face every day, every second. We don't get a break, and all the love in the world doesn't heal this type of injury. It doesn't take away the fevers, the cold sweats, the lack of privacy, or independence. Ramon's attitude was based around the idea, that each individual person has their own threshold for suffering, and while one person might find satisfaction in living dependent on others, and/or machines that, that low standard of quality of living should not be forced upon those of us that have to live it. After all, only Ramon knew what it was like to live in his shoes, and the personal hell that he had to endure, for almost thirty years, against his will. For me, and Ramon, paralysis is worse that being a prisoner. We are being punished, by being forced to live through unnatural means, against our will. That isn't fair, nor is it humane.

I can't speak for other quadriplegics, I can only speak for myself, about my struggles and the physical, and emotional impacts that paralysis has had on my life. I don't judge people who want to live this way, by calling them crazy, for giving in, for settling, for enduring, despite all the pain. I only know what I lost, what memories haunt me, what standards I hold myself to, and what brings me joy and fulfillment. It's easy to judge, when you don't have to deal with a fraction, of what I (or Ramon) went through, and in my case, continue to endure. No one has to sit every day, battling my inner deamons, frustration, disappointment and disgust, over the way I'm forced to live, but me. I think everyone should have the right to determine their own level of worth, and value, in terms of living, versus suffering. Let me worry about my own soul. Let God be my judge, instead of presuming his/hers/its purpose for my life.

Unlike Ramon (who cleverly had a chain of people prepare him a glass of water, mixed with poison, which he ingested, through a straw, on camera), my conscious would never allow me to jeopardize someone else's freedom (by making them criminally liable), or share the burden of the responsibility, for my death, by asking friends, or loved ones, to carry out, my wish to die. If/When the time comes, that I've reached my threshold, and can no longer continue to suffer, as I am, I will choose to excersise my right to refuse nutrition/hydration. It will not be quick, like Ramon's death. It will most likely, be days, or weeks, of slowly waiting to die. Although it might be painful for my loved ones to witness, it is the only option, that safeguards my loved ones, and keeps all the blame with me. Personally, I don't view my refusal of help, as suicide, rather the natural progression of nature. I feel as though my life is being sustained through artificial means, and do not find joy, or quality, in the lifestyle that paralysis has forced on me. I don't see my refusal of nutrition/hydration, any differently than my refusal to want to be hooked up to a vent, feeding tube, colostomy, or any other artificial life support. Right now, people act in place of machines. Either way, I'm unable to fend for myself, and would have died long ago, if I "left my life into God's hands." I think it's bad enough, I'm forced into a corner, where my only options, are to accept this low standard life, full of chronic illness, and no cure in sight, or have to starve to death. We treat our pets more humanely, and like Ramon, it really pisses me off, that God & religion, have such a strong influence, over laws, in a country where church & state, are meant to be separate.

During his campaign to die, Ramon befriended and fell in love with one of his lawyers, Julia. She was suffering from a degenerate neurological disease, similar to MS, and in my opinion, used Ramon's case, to give herself peace of mind, and as a selfish means, to try and use Ramon's case (in the event the government granted him permission, to die by lethal injection) as a precedent, to be able to end her own life, with dignity, before her disease effected her ability to reason, and/or memories. Whether intentional or not, and despite the fact that she was married, she toyed with his emotions, and even went so far as to help him write, and publish his book, and promised him that'd she'd personally help him carry out his wish to die, and die alongside him, once his book was published. Instead, she backed out of the deal, by letter, leaving Ramon, more heartbroken and suffering, than before she met him. Ultimately, it is a local woman, named Rosa (who fell in love with him, became his friend, around the same time period as Julia), who agrees to take the pivotal part, in helping Ramon, realize & carry out his plan to die. It is ironic, that during their first meeting, Rosa goes to meet him, in hopes of inspiring him to find a reason to live. Over time, she came to love and respect him, and finally understood, that the most loving gift, she could give him, was to recognize his suffering, and respect his wish to die.

Like Ramon, my wish is for people to understand how much I'm suffering, and to also respect my wish to NOT want to live THIS way. It is not a normal way to live. It is not easy, being 100% dependent on others (I find it frustrating that some people could accept & respect my wishes, to not want to be dependent on machinery, but yet expect me to accept being dependent on people). Being dependent on others is in many ways harder than being dependent on machines (which I have been), because there is shame, guilt, and judgement, involved in having to reveal yourself and be cared for by people. It is degrading, embarrassing and humiliating to have to be bathed, clothed, and fed, like a baby. It is extremely hard having to accept help, and share your private, personal space, when you have lived and are accustomed to being, an independent, self sufficient person.

Ramon was right, in that "this life has no dignity." I don't think that it's fair that such a low quality standard of life be forced upon people. I think people SHOULD have the right to die with dignity, and peacefully, if all life offers them, is a life of chronic illness, and suffering. People with incurable, debilitating diseases, shouldn't be forced into living UNNATURALLY long life spans, just because there are resources and means available to extend their lives. People like me & Ramon, should have a humane option, out of being otherwise, prisoners in our own flesh. I'm not saying that everyone in my shoes would chose to "opt out," I'm just saying that sometimes ending a life to prevent prolonged suffering, is more humane, than forcing someone who would otherwise be dead (because they can't care for themselves), to live and suffer.

My hope is that, if I do choose to one day stop accepting help, that those people closest to me understand my reasoning, respect my decision and know that I tried to live THIS life, for as long as I possibly could, for their sake (I do not go through all this Hell for myself. That point has come, and gone, a very long time ago). I hope that my loved ones will forgive me, and know that it is not for lack of love, that I want to leave them, but out of exhaustion and being tired of suffering. I wonder if Ramon's family have forgiven him, and have been able to move forward without him. I wonder how well, or poorly they coped with his death, despite knowing his wishes, and witnessing his suffering. I wonder if there is a heaven, and a God, if Ramon is there, beside him/her/it. I think if God exists, he/she/it will weigh the suffering, compassion, and generosity, of people like myself, and Ramon, and consider the amount of good a person has done, against the bad, and that a loving, all knowing God would forgive people, in our situation, for wanting to leave THIS life behind.





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Planning Ahead, Because You Never Know.

I've been doing a lot of research lately, and thinking about my wishes, in the event I get sick, and/or die. I realize this subject matter seems morbid, especially among my peers (people in their late 20's, early 30's), but after everything I've been through, I know how important it is to consider these types of things, and put your wishes down in writing. Reality is, life is unpredictable and it doesn't matter how young, or healthy you are, for life to take a drastic change. Spinal cord injuries, diseases (like MS, Parkinson's, ALS & Guillain-Barre), traumatic brain injuries, or tumors are all examples of things that can hit a person off guard, and severely change a person's life, practically overnight. I think once a person turns eighteen, everyone should seriously consider creating a living will.

Shortly after my accident (I was twenty-four), I needed help, to take care of all of my financial responsibilities, notifying my employer (I had a few weeks left of teaching, before summer break, and had lined up a bar tending job for the summer, which I was supposed to begin that following Tuesday), canceling a cosmetic procedure I had scheduled for the end of that month, breaking my lease, packing up my things, selling my car and closing down my apartment. Obviously, since I was an adult and unmarried at the time, I had to authorize someone to make decisions for me, and give them permission to handle all of my affairs. I chose to give power of attorney to my parents (dad & stepmom). They made a lot of choices, and did a lot of things that I was unpleased with. At the time, I was in no state to be fighting, was terrified, and in shock. My whole life that I had built, up until that point, came crumbling down, at lighting speed. It sent shockwaves through my entire family, and the burden of it all created a tremendous amount of stress, and grief for everyone involved. It created a ton of tension (putting it mildly) between my parents, myself, my boyfriend and my mother and my stepdad's family. Many horrible words were said, and tears were shed. To this day, it has created a wedge between me, and certain members of my family.

Although I'll never agree with many of the things my parents said and did, I do recognize that they were under an insane amount of pressure and put in an extremely awkward position, by having my life, literally dumped into their hands overnight. They had to process losing the daughter they always knew, and the realization that all my dreams would be shattered forever. They knew, as did I, that they were the only ones in the position to take care of everything that needed to be done, on top of maintaining the responsibilities of their own lives (house, jobs, bills, etc.). It was a horrible situation, for everyone involved. Looking back, I wish I would've thought about my wishes, quality of life, and have put those wishes in writing. My parents never asked for the burdens my accident created, and I never want to go through the heart ache and misery that I went through. They handled my affairs much differently than I would have, and it caused me a lot of additional suffering. That said, I think they did they best they could, at the time. Everyone deals with trauma differently, and I try to always remind myself that I backed them into a corner. Someone had to take care of it all, and as an adult, I couldn't just give POA to everyone close to me. They were my closest next of kin, that was capable of doing any of the big issues, that needed to get done. I never want to have to place that type of burden, on ANYONE, ever again. My life is my "mess."

I also don't ever want to be in the vulnerable position of having to have other people make decisions that greatly impact my life. I don't want to place the burden of making those heavy decisions on my loved ones, and put them in the position of guilt, or blame, because they do something wrong, or go against my wishes. I also don't want my loved ones to be in the dark, or possibly pitted against one another (which did happen) because they don't know what my wishes are, and have to guess, or wing it. If I had seriously thought about worst case scenarios, and had had a living will, and an emergency plan put in place, I could've avoided myself & my family A TON of heartache and drama. As for me, I could've spared myself the hell that living with paralysis has been. I could've died, back then, when I was still in ICU, running ridiculously high fevers, and hooked up to life support. Death would've been very easy then.

I clung onto life, the first year or so after my accident, out of fear, shame and ignorance. I was terrified by the thought of death, because I hadn't accepted the notion of my life never going back, to the way it was. I had false hope, and denial over the realities of my situation. I was also (still am) ashamed at my mistake, and how stupidly I'd destroyed my life, and ruined everything I had worked so hard to build. I think I was in a numb state, of grief and denial. Hope of a cure and belief in the power of my will helped me make it through the hospital and nursing home. Reality has set in for me, and this life is not a life I would've chosen, if I had TRULY believed what the doctors had told me. I just wanted so badly to fix my mistake, and make everything better again. I really thought if I tried hard enough, I could beat the odds, and be a miracle. In that respect, I've been a complete failure, to myself, and have never felt as though I have redeemed myself for all that my mistake took from me, and all the pain I put my loved ones through.

I've made many conscious efforts since then, to take control back over as much responsibility as I possibly can, and make arrangements so that the next time I go knocking at death's door, my family will have the least amount of burden possible, and I have the peace of mind, in knowing MY wishes will be carried out. There are people in my shoes (and worse) that find satisfaction with their lives, as quadriplegics. I don't. To each his own. Personally, I don't feel this is a quality life. There are certain measures, or extremes that I'm not willing to endure to sustain the life (not on top of my already difficult situation), like having a tracheotomy, or colostomy. I refuse to live that way, and have laid out the dos and don'ts, for when I can no longer speak for myself. I have a living will (which I think every adult should have), so none of my loved ones will ever have to guess, or stress, over making decisions that effect my quality of life. I have a last will & testament, so I know, the right people will get what I want them to get. There won't be any room for fighting, or debating, because I've laid everything out, regrinding my possessions, and what I want to happen with my remains.

We don't currently have a program in NJ, but several states have initiated POLST (Physician Orders for Life Sustaining Treatments) programs, where patients can work in conjunction with their physician, to create a plan of action, or non action, based on the patient's wishes. They can serve in conjunction with a living will, and clearly spell out issues like, feeding tubes, IV hydration, pain medications, and other life sustaining machinery and treatments. I think it's worthwhile for everyone to take the time to consider these types of issues, for themselves, and put them in writing. Living wills, and last will & testaments are easy to create, and relatively inexpensive. It is well worth the ten, or twenty minutes it takes to fill one out. You never know when you might need one, and it's better for you (and for the sake of your loved ones) to have one put in place in the event something happens, and you can't speak for yourself. It's also important to be able to discuss your wishes openly, with your loved ones and doctors. You should make sure you know your rights and simple documents, like living wills, POLSTs and last wills, can ensure your rights are protects, and your wishes are carried out. Food for thought.

Info on POLSTs- http://online.wsj.com/article/SB10001424052748703327404576194942197661606.html?mod=WSJ_LifeStyle_Lifestyle_6


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Autonomic Dysreflexia, or Not Autonomic Dysreflexia?

I have a C4/C5 complete injury, since June 2005. I suffer from autonomic dysreflexia symptoms A LOT. I deal with cold sweats, and chills on a daily basis. For the past two years, I've been suffering from this mystery chest pain/pressure. My doctors have done numerous tests, always ruling stuff out, but never coming up with any concrete answers besides, "it's probably neurological." No DUH?! Ya think? They've taken blood, X-rays, CAT scans, an EKG, ultrasounds and sonograms. My heart and lungs results always show as fine. I do have a history of DVTs (deep vien thrombosis-aka blood clots) in my left leg, which is common, and we (my doctors & I) decided against keeping me on blood thinners, since I have a filter, already in place to prevent clots from reaching my heart, or brain. All of my major organs, including my gallbladder have showed up as norma. With the exception of anemia, and the obvious, paralysis, every tests my doctors have given me come back "norma." So, I can't help but wonder if it's all just "normal," for someone in my condition.

The thing is, in order for these symptoms to be classified as autonomic dysreflexia, I thought there had to be an accompanying rise in blood pressure. Most of the time, my blood pressure & heart rate are fine. Yet I feel like I have the flu, almost constantly. I realize that some of my symptoms mimic having an UTI, but come on, can I really ALWAYS have a UTI? Since I have a supra pubic catheter, there's always a certain amount of bacteria in my urine. It seems almost impossible, to ever know for sure, what's wrong. I feel like UTI ends up being the scapegoat diagnosis, for all my problems, and the doctors way of getting around saying, "I have no clue." That's not to say my doctors are "bad," or don't know what they're doing. I've been to specialists, and the thing is, they can only do so much. They have to base their diagnosis, on my descriptions, which are of secondary, seemingly random symptoms. I'm sure it's as equally as frustrating for them, when they can't provide me any relief, or figure out the source of my symptoms.

I try to avoid antibiotics. They reek havoc on my bowel program, not to mention, constantly taking them, just breeds stronger bugs. My doctor & I have come up with a few possible reasons for all of my "sick" symptoms, that include: hemorrhoids, stomach ulcers, and gas. The symptoms vary, slightly, from day, to day, but I suffer from at least a couple, EVERY DAY. The chest pressure builds up randomly (I haven't been able to correlate a direct link to food, or time of day) and subsides a LITTLE when I lay down, versus sitting up. The fact that the pressure is usually worse when I'm sitting up, it makes sense that it could be hemorrhoids, since that's when there's more weight being distributed to my bottom. The other batch of symptoms I get include: cold sweats, chills, phantom sensations in my legs and feet, this odd, gross tingly sensation, all throughout my body, fevers and aches. I usually chalk them up to AD, but like I said earlier, my blood pressure is often low, or normal, while I'm experiencing these symptoms. My question is, are these symptoms really AD, or just freak neurological impulses, thanks to my screwed up spinal cord? I've experienced classic AD symptoms, like profuse sweating, goosebumps, and killer headaches, when my catheter has been blocked. In these instances, my blood pressure definitely did spike, and decrease, once the obstruction was cleared. I think the gas theory makes sense, since it's pain I can't feel, but I've tried products like Gas-Ex & Beano, and never get any relief. My diet is full of veggies, and fiber. It doesn't vary that much. I take the same dose of BP related meds, every day, and have BP every other day, so it's not like constipation is the cause. I do notice the cold sweats and goosebumps during BP, but figure that makes sense, since the stimulation is directly agitating the hemorrhoids. It's a vicious cycle, with the only solution, being a colostomy bag. If I've said it once, I've said it a thousand times, I will absolutely not consider getting a colostomy.

I take Pepcid for my stomach, so that should theoretically help with all the medication I take. If it is always gas that's the culprit, what can I do, besides what I'm already doing? I use topical treatments, and suppositories for the hemorrhoids, but considering I have to have a BP, I'm wondering if there's any other remedies, I haven't tried. I know from reading things online, that hemorrhoids, are quite common, among spinal cord injury patients. I'm wondering if anyone else, in my similar situation experiencing similar symptoms, due to hemorrhoids.

Other than the hemorrhoids, I have noticed a correlation to my period and feeling sick. When I was first injured, I didn't know I had my period, unless my caregivers told me. These past couple of years, I consistently run fevers, have cold sweats and aches, around the week of my period. I'm wondering if this is "normal" among women, with high level spinal cord injuries. I'm also curious, if perhaps I'm experiencing stomach cramping, that I can't feel, and that my brain is interpreting it as these AD like symptoms, even though my blood pressure isn't effected. I had a recent GYN exam, and everything was fine, but it HAS to be more than coincidence that my flu like symptoms increase like clock work, every month. My aunt suggested that I go on one of the birth control pills, that limits the number of periods you have, to a few times a year. The only problem with that idea, is that I'm worried about the possible weight gain, that taking birth control pills tend to cause. I watch my weight carefully. Considering I have little, to no functional movement, that also means having no means of exercising, to shed extra pounds. I already count calories, so I'm very hesitant to risk taking something, that may very well, make matters worse, or not help at all. I don't know many women with high level spinal cord injuries, but am hoping that someone might read this, and be able share their insight, about how their menstrual cycle has changed, or caused AD, since their injury. I never had much complaints, with cramping, or PMS, when I was on my feet. Now, I can't even feel my period. I just know I feel worse than usual, when I have it. I don't know if it's just a change based on aging, or something related to my injury. It's so hard finding concrete solutions, and/or answers.

The fevers and chills are the worst, of all the symptoms. The fevers I get usually start around dinner time, and last well into the early morning (2-4am). I've read that the onset of fevers, later in the day is common. I'm wondering why that is, and if it's just my body's way of expressing exhaustion. I almost always know when I have a fever, because I start to feel extreme fatigue. As soon as I start feeling tired, I usually ask someone to take my temp and I'm almost always right. The fevers are low grade, usually ranging between 99-100.5 degrees Fahrenheit. The weirdest (and most frustrating) aspect of my near daily fevers, is that they don't subside easily. I almost always take Tylenol, or ibuprofen, and lately, not only do the fevers NOT drop, they've actually INCREASED. I'm not sure how else to combat the problem, besides taking pills, and having someone place cool rags on my forehead. It's exasperating, having fevers so often, and having no obvious cause, or solution. Almost every night I start off uncomfortable, with just a sheet covering me, my fan on, and I toss and turn my head, because the discomfort prevents me from falling asleep. Some time during the night, once I've finally fallen asleep, my body cools down. By the morning, I've usually switched over to freezing, and have to have a heavy comforter on me. It's a horribly, redundant, annoying pattern. I know people with high level spinal cord injuries are extra sensitive to ambient temperature. I'm wondering if other people with high level injuries suffer from fevers, as often as I do, and if so, what theories they might have regarding causes/solutions.

Whether or not my chronic "illness" is caused by AD, or not, I'm just trying to see if anyone else out there is experiencing similar symptoms, and if so, if they've found anything for relief, that I haven't already tried. I'm constantly battling depression, and anxiety over all the loss and trauma that my paralysis has caused. Although I'm seeing a therapist, and take several medications, to help cope with the psychological impact that paralysis has had on me, it's extraordinarily hard finding joy, when I'm constantly feeling physically sick. If I could alleviate some of the physical discomfort, it would certainly have a positive effect on my mood, and make it easier to find reasons to move forward. Honestly, I feel as though (based on experience in dealing with doctors, and knowing my body) most of the discomfort is rooted in my spinal cord injury's, overall impact on my body, and the natural progression of time, given the insane amount of change and stress, my body has physically gone through.

Bowel program alone, seems to cause as much discomfort, as it causes. Unfortunately, it''s something I HAVE to have, in order to keep me alive. Obviously (besides the birth control option), there's nothing I can do about having a period. So really, I'm just trying to pin point what is causing what, and find out if there are other people out there, experiencing similar symptoms. From a medical perspective, I'm curious to know if fluctuating blood pressure, is the only qualifying characteristic to tell for sure if a symptom is AD related, or not. I often feel like my injury has condemned me to a life a chronic illness, that is just part of living with paralysis. Living this way, is certainly not normal. I have to rely on bp, medications and being dependent on others, just to stay alive. Those three things are a given, based on my condition. Having no cure in sight, makes the thought of having to live this way forever, seem hopeless. Every year, I seem to get physically worse, and therefore feel emotionally more desperate to escape. I want to know if all that I go through, is REALLY just TYPICAL, given my injury, or if it's just me. Any suggestions, shared experiences, feedback and/or ideas would be greatly appreciated!

Gaming By Mouth

I'm quadriplegic (C4/C5 complete) due to a swimming accident in 2005. Before my injury, one of my favorite hobbies was playing video games. I'm thirty, and have been a gamer practically my entire life. The first gaming system I ever owned was a color computer, that hooked up to the TV and used huge eight track like cartridges. This was back around my kindergarten days, and I can remember using a simple joystick to play the Sesame Street educational games and a face maker game that I had for the system. My dad's a computer programmer. He had built his own hard drive at the time (1985), as well as owning an Amiga computer. I can remember being one of the only kids with a computer at home, in those days. We even had a color printer, with the old fashioned style paper, that had the holes down both sides & the perforated edges.

I remember learning "Basic" language in school, and using actual floppy (6 inch, skinny, floppy & square) disks to store our information. My second computer was a Comodore 64, which my brother handed down to me. TheComodore used floppy disks and Basic commands to "run" each game. It used simple joysticks to play the games, with one button. Some of my favorite games were: Quix, Friday the 13, Mission Impossible, B.C. Quest for Tires, Up & Down and Apple Cider Spider. At the time, my brother had the original NES. Both systems had hundreds of eight bit titles. Between the two of us we had dozens of games for each system. I can remember my best friend and I playing video games for hours! Growing up my friends and I also played outside a lot, played board games and with toys. Although we liked video games, our time glued in front of the television was more well balanced than it is for most kids today.

By the time my brother gave me his NES (around 1990), most of friends had one too. I fell in love with many of the Nintendo characters (Mario Bros., Yoshi, Toad, Princess Toadstool, Kirby & Zelda), and have been a loyal customer and fan ever since. When Super Nintento came out, my parents refused to buy it. I saved up my two dollar a week allowance and bought it for myself. I remember being so proud going to ToysRUs and handing over my huge wad of singles! SNES was a 16 bit console with a four button controller. It's funny, looking back, at how amazed I was by the graphics. I can actually remember saying how "real"' the graphics looked, which seems silly, compared to today's graphics. SNES remains to be my favorite console of all time, with some of my most loved games: Earthbound, Zelda: A Link to the Past, Super Mario World, Super Mario RPG, Tetris vs. Dr. Mario, Mario Kart, Bubsy and Donkey Kong Country. I've owned almost every Nintendo gaming system and/or handheld, with the exception of the most current system, the Wii.

At the time of my accident I had the three most current gaming systems at my apartment (I owned Gamecube & Xbox and my ex-boyfriend owned Playstation 2). I enjoyed playing games by myself and with friends in my spare time. In fact, the night of my accident I had been playing my Gameboy Advanced SP, just hours before I was injured. Gaming has been a favorite pastime practically my entire life. Despite my disability, I continue to enjoy gaming, by playing games with a mouth-stick.

Last year, I read about an amazing paralyzed professional gamer, named Randy that plays with his chin and mouth. Like me, Randy has been a gamer almost his entire life. Unlike me, Randy was born with his disability, and has only ever played by chin & mouth. Being a fellow gamer, and having had the experience of gaming with two hands, versus playing by mouth, I'm completely blown away by Randy's level of skill and the complexity of the controllers he uses. I consider myself to be a pretty good gamer, but certainly not good enough to go toe to toe, or in mine & Randy's case, mouth to hand, versus professional gamers. I'm in total awe of his amazing skill! "I'm not worthy" *bows head* LOL!

Personally, not being able to use my hands limits me to certain type of games. Given the fact that I can't hit multiple buttons at once (using a mouth-stick), I can no longer play most console games. The modern controllers have way too buttons and the games rely on complicated combinations. The way Randy plays is a bit too much work for me. I'm satisfied with the balance and selection of games I've found. The mouth-stick I use to type and use the computer is about twelve inches in length, with a plastic mouth piece and rubber tip (like a pencil eraser). Most of the PC games I play rely solely on the mouse (I use a trackball style mouse. The rubber tip of my stick makes rolling the ball easy). I use built in short cuts, like "sticky keys" and "click lock" in the control panel settings, to allow me to be able to drop, drag and highlight.

I started using a mouth-stick to play video games during my stay in a nursing home (2005-2007). A buddy of mine turned me on to a MMORPG (Massivly Multiplayer Online Role Playing Game- other examples include: World of Warcraft, EverQuest & Guild Wars) called Maple Story. For those of you not familiar with MMORPGs, they are games in which you create a character/avatar, usually a specific class within the game, in which you play with other people, in real time. They are like virtual worlds, where you can explore, form guilds, complete quests, chat, and play with friends, or people you meet within the game. They usually have loose story lines, that allow you to have freedom to play the game how you want. In fact, quite often people end up meeting up in the game just to chat & socialize with fellow players. I've met a lot of nice people, over the years playing Maple Story and even met a few of them in person (My friend Naama-aka Jane-stayed with me and went to one of my exhibits, back in 2009, traveling all the way from Israel).

As cheesy as it might sound, playing Maple Story contributed greatly to me being able to survive my stay in the nursing home, and keep my sanity. For starters, the style of the game is a classic side scroller, that uses the keyboard for controls. Allowing for customization of commands, let me arrange my keyboard so that I can hit the "jump" & arrow keys at the same time. The graphics are very animesc (I just invented that word) and reminiscent of many of my favorite Nintendo games. The whole look and feel of Maple Story fit right in with my tastes and playing gave me a much needed escape from the harsh realities of my life. Being able to socialize, and vent to real people, also helped to keep me distracted and helped keep me from becoming totally withdrawn and depressed. In the Maple Story universe, I don't look any different, from anyone else. When I meet people in the game, they have no clue that I'm playing by mouth, unless I tell them. As insignificant as that might seem, the fact that I could blend in and feel "normal" again, helped give me a confidence boost to be more social, and interact with people. Having been able bodied for the first twenty four years of my life, my disability brings with it a huge amount of body image issues, and I struggle a lot with how different I look in appearance, since my accident. To have the luxury of not standing out, actually made it easier to break the ice and talk about my injury, and my disability (in the article about Randy, it mentions him having similar feelings and about the sense of freedom that he feels, while gaming). It makes me feel good to be able to keep up and compete with my able bodied peers, within the game. Everyone I meet is always stunned and surprised when I tell them I'm paralyzed. It's hard for the average person to imagine how it is that I can type so fast, and how well I play the game. I usually jokingly say, "you should've seen me when I could use my hands!" I can only imagine how amazing a gifted player like Randy would be, if it were not for his disability.

Like I said earlier, for the most part, on the PC I stick to games that only require a mouse to play. There are tons of games that fall into this category, including many of the popular social networking connected games, likeFarmville, Bejeweled and SPP Super Poke Pets. My favorite genres include, hidden object (like Huntsville Mysteries), match three (like Jewel Quest), and simulation (like The Sims). Many of the games I play are for free, with optional features for purchase. Another great invention (besides the trackball mouse- which stays stationary, and requires you to move just the ball, instead of the entire mouse) that has widened the selection of games I can play, has been the touch screen. There are two types of touch screens, pressure and capacitive. I have games for both. The Nintendo DS uses a pressure based touchscreen, on which I use a knitting needle, attached to the end of a traditional mouth-stick. The hand held system comes with a small plastic stylus, however it's way too short & thin for me to use. The knitting needle tip, mimics the stylus tip and gives me the same amount of accuracy. I have over thirty games for my DS, that for the most part, rely totally on the stylus and don't require pushing any buttons (some have annoying microphone or button requirements, that I basically ignore, or get help with, if I can't, but that don't hinder overall game play).

The iPad uses a capacitive touchscreen, which uses the electricity in our bodies (literal touch) to work. Given the fact that my hands no longer work, I use a special stylus (called a Pogo) attached to the end of a mouth stick, which mimics touch. The capacitive fibers wear down over time, and need to be replaced, depending on how much you use them. There are tons of games available for purchase (many have "lite" version for free, to test games out) in the Apple apps store. As an artist, I also use my iPad to create digital art, in addition to using it for writing, reading and gaming. My iPad is almost as versatile as my PC, and I love the fact that I can sketch and create art on it. As far as the games go, the graphics and sound on the iPad are superior to that of the DS, and uses a much larger touch screen surface.

Below I've listed some of my favorite game titles/gaming websites, for each platform:

PC-
1. Maple Story MMORPG- http://maplestory.nexon.net/
2. Farmville-  http://www.farmville.com/
3. SPP SuperPoke Pets! https://secure.superpokepets.com/spp/login
4. Big Fish Games- You can download & pay per game, or pay a subscription for full games. I enjoy playing "match 3" games & "hidden object" games. I enjoy: Huntsville Mysteries, Bookworm, Asami's Sushi Shop, Fishdom, Puzzle Quest 2 & 7 Wonders. All the titles I listed are mouse driven. http://www.bigfishgames.com
5. The Sims Series- http://thesims.ea.com/
6. Spore- http://www.spore.com

Nintendo DS-
1. Animal Crossing: Wild World- http://ds.ign.com/articles/673/673671p1.html
2. Mario vs. Donkey Kong series- http://ds.ign.com/articles/113/1134070p1.html, http://ds.ign.com/articles/735/735297p1.html
3. Final Fantasy IV- http://ds.ign.com/articles/887/887583p1.html
4. Final Fantasy: The 4 Heroes of Light- http://ds.ign.com/articles/112/1125729p1.html
5. The Cooking with Mama series- http://ds.ign.com/articles/733/733555p1.html, http://ds.ign.com/articles/837/837283p1.html, http://ds.ign.com/articles/103/1038659p1.html
6. Disney Princess: Magical Jewels- http://ds.ign.com/articles/831/831424p1.html
7. The Professor Layton Mystery series- http://ds.ign.com/articles/851/851856p1.html, http://ds.ign.com/articles/101/1017161p1.html, http://ds.ign.com/articles/111/1119632p1.html
8. Chrono Trigger- http://ds.ign.com/articles/932/932438p1.html
9. Fire Emblem: Shadow Dragon- http://ds.ign.com/articles/954/954421p1.html
10. Wario's Warehouse series- http://ds.ign.com/articles/587/587217p1.html, http://ds.ign.com/articles/107/1079712p1.html
11. Brain Age series- http://ds.ign.com/articles/702/702057p1.html, http://ds.ign.com/articles/813/813780p1.html
12. Dragon Quest IX: Sentinels of the Starry Sky- http://ds.ign.com/articles/110/1104879p1.html
13. The Legend of Zelda: Phantom Hour Glass (was very disappointed that Zelda: Spirit Tracks uses a button/stylus combo)- http://ds.ign.com/articles/822/822825p1.html
14. Pokemon Diamond (have to use buttons, but it is a turned based RPG, which makes that doable)- http://ds.ign.com/articles/782/782443p1.html
15. Yoshi Touch & Go- http://ds.ign.com/articles/595/595523p1.html
16. Age of Empires Mythologies- http://ds.ign.com/articles/933/933525p1.html
17. Harvest Moon DS Cute- http://ds.ign.com/articles/864/864320p1.html
18. Ninjatown- http://ds.ign.com/articles/924/924068p1.html
19. Gardening Mama- http://ds.ign.com/articles/969/969213p1.html

iPad-
1. Final Fantasy- http://itunes.apple.com/us/app/final-fantasy/id354972939?mt=8
2. Crystal Defenders- http://itunes.apple.com/us/app/crystal-defenders-for-ipad/id379052382?mt=8
3. Chaos Rings- http://itunes.apple.com/us/app/chaos-rings-for-ipad/id384090103?mt=8
4. Puzzle Quest- http://itunes.apple.com/us/app/puzzle-quest-hd/id398190768?mt=8
5. Color Cross HD- http://itunes.apple.com/us/app/color-cross-hd/id383300986?mt=8
6. Jewel Quest Mysteries: Curse of the Emerald Tear- http://itunes.apple.com/us/app/jewel-quest-mysteries-curse/id337188077?mt=8
7. Chop Chop Ninja- http://itunes.apple.com/us/app/chop-chop-ninja/id346877580?mt=8
8. Angry Birds series- http://itunes.apple.com/us/app/angry-birds/id343200656?mt=8
9. Smiles HD- http://itunes.apple.com/us/app/smiles-hd/id364871736?mt=8

Related Info:
1. Article about Randy- http://www.asylum.com/2010/04/13/amazing-pro-gamer-nom4d-plays-with-just-his-lips-and-chin/
2. Randy's YouTube channel- http://www.youtube.com/user/TheRealN0M4D
3. Video demo of me using my iPad (with Pogo stylus)- http://www.youtube.com/watch?v=H85Lb8Pyu9U&feature=youtube_gdata_player