Tuesday, July 26, 2011

Sketchbook Is Finally Digitized & Online!

Last year I entered an Art House Co-Op project, called "Sketchbook Project: 2011." Each artist was asked to choose a theme from a list of predesignated themes (I chose "Help!") and sent a 80 page sketchbook. The only requirements were to fill the sketchbook according to the theme you chose & send it back. Each sketchbook was given a barcode for tracking purposes. About 10,000 artists participated & the sketchbooks were taken on a cross country tour, to multiple exhibits, where people from all different states could look through them. Once the tour was concluded, the books were all brought back to the Brooklyn Art Library and some were digitized (if you chose to pay the additional fee) as part of Art House Co-op's digital library.

Since I do all my artwork by mouth, it was much easier for me to create the sketches/artwork for my sketchbook on my iPad & print them out. I created a description page and image for each two page layout. The book is now digitized and available for viewing through my Art House Co-op profile, or directly through this link (www.arthousecoop.com/library/4604).

It took me months to fill the book. Unlike painting, I can work on my digital artwork in bed. Since I haven't been well enough to get up & paint as often as I'd like (these last couple of years) my iPad has given me a new outlet for artistic expression. I thought this project would be a great way to help raise awareness about paralysis & spinal cord injuries. The theme "Help!" fit in perfectly with my intent to ask people to help me (and the millions of people suffering with paralysis world wide) by supporting research for a cure to paralysis. All the sketches, digital images & collages I included in my sketchbook are about my struggles with my accident, my injury and my life with paralysis.

I'm pleased with how the book turned out (with the exception of the first two page layout- my collage was pasted upside down by mistake). I'm hoping that now it is available online for viewing it will get a lot hits, and get people thinking about paralysis & spinal cord injuries. They say a picture is worth a thousand words, so I hope my artwork has an impact on the people that see it. I want to open people's eyes, educate the general public & hopefully inspire some people to support research & advocate for a cure. I'd love to hear feedback & please share the link with friends! Thanks <3

- Posted using BlogPress from my iPad

Sunday, July 17, 2011

Control Freak, With No Control

One of the many annoying things about being completely paralyzed, and totally dependent on others is the fact I can't take care of my own things. Not being able to be self sufficient with my personal hygiene and toileting needs are by far, the worst most embarrassing, degrading and invasive aspects of being paralyzed. Not being able to take myself to the bathroom, wash, dress, groom & feed myself are the aspects of being paralyzed I hate most. However, not being able to take care of my things, and maintain my living space is the second worst aspect of not being able to do anything.

Even though I have help from people (aides, nurses, friends & family) and try my best to direct how I would like things done, and where things should go, I'm forever frustrated because no matter what, no one ever manages to do things exactly the way I would like. It boils down to two key problems. First off, there are just too many "hands in the pot." On a daily basis I've got three, to four different people helping me. Even though I try my best to be organized and label everything I possibly can, things routinely get misplaced. Either the person helping me doesn't put the item away (right away), and the item ends up sitting in the wrong spot for days (and then potentially gets moved by someone else- in the effort to straighten up) or it gets put away in the wrong place all together. The second annoying thing that is most frustrating is that most times things are not as clean, or orderly as I'd normlly keep them, if I could care for them myself. The old adage "if you want something done right, do it yourself" most certainly applies to me, for basically everything. However, my paralysis keeps me from being able to do anything besides giving verbal directions and asking for help, and then hope for the best.

I try so hard not to lose my temper, get impatient and to not let "the little things" get to me. In the larger scope of everything I deal with (and am forced to endure), thanks to paralysis, I really can't afford to obsess over material things. Rationally, logically, I understand my stuff is just stuff. At best, my material possessions offer me a small amount of comfort and distraction. They don't really impact, or influence the bigger, more pressing dilemmas, physical limitations and burdens I deal with. I have enough on my mental "plate" at any given moment, that would ordinarily seem completely overwhelming to the average individual. If I let myself get mad or upset, every time I come out of my room to see a dirty kitchen, or my aides can't find something I'm looking for, I would go absolutely mad.

I think what makes living with paralysis especially hard for me, is the type of person I was before my injury. When I was on my feet, living independently I had a classic "A-type" personality. I was what you might call, a "control freak," and definite over achiever. I planned my life down to the nano-second. I put a lot of pressure on myself to succeed in everything I did: as a student, as a teacher, as a daughter, as a friend, as a person. I hid every self perceived flaw and tried to be as close to "perfection" as possible. Being organized, and a planner helped me thrive and even though I often balanced a lot on my plate, I managed well.

I remember when I was in college, my friends and family would tease me, because every semester I created a color coded grid, allotting time for everything: from class, to study time, to work, to sleep, to time with my boyfriend. I kept my time management chart with me at all times (in my school planners) and had several posted (one in my bedroom and one posted at my boyfriend's). I always used green to signify "boyfriend time." My ex was a much more laid back, and a "go with the flow" kind of person, so he was always forever getting frustrated with me. Looking back, it was a bit over the top, but I know it helped to keep me focused and on task. I ended up graduating from college with a 3.9 GPA, and I definitely attribute that to my ability to multi-task and micro manage my life.

Being organized also definitely helped me to be a good teacher. I had my lessons planned out months in advance (so I was never caught off guard, or left scratching my head for things to do). Everything in my classroom had its place and my students were each assigned roles (which I alternated from month to month, based on my seating charts). Even though I had nearly five hundred students, in twenty different classes, I always knew what I was doing with each group, and easily juggled up to eight or nine different projects, during any given week. My classroom ran like clockwork, which helped my students to stay on task and made it easy to maintain control and give directions.

By the time I had started teaching, I had graduated from using my paper college planner (highlighters and tons of post-its) to a hand held electronic organizer (Palm Pilot). My Palm Pilot was my life saver. I relied heavily on it, to balance my time between work, graduate classes, family time, going to the gym, running errands and my social life. My apartment was always spotless. I had a particular way of doing everything: cleaning, laundry, keeping records, paying bills, etc. I had a particular way for folding my clothes. My closet was organized by color, and grouped according to the various types of clothing (strapless shirts, short sleeve shirts, long sleeve shirts, skirts, capris, kakhis, dress pants & jeans). My dvds, and cds were alphabetized (since I owned hundreds). I kept all my receipts, and paperwork neatly filed in filing cabinets. My books shelves were organized by topic. Everything was easy to find.

I tried not to let things pile up, and cleaned up after myself everyday. I enjoyed coming home to a clean living space. I loved the crisp, clean scent of Clorox wipes, Swiffer solution, laundry detergent, Febreeze and Glade Plug-ins. I liked being able to always know where my things were, and to have everything tidy, uniform, and in its place. I always felt more peaceful and relaxed when everything was put away and everything was clutter free and sparkling. I tried to keep my home and classroom clean and organized at all times, so if an uninvited guest, or surprise visitor (like my principal- at work obviously) showed up, I wouldn't feel caught of guard or embarrassed.

My paralysis has taken nearly every ounce of control, and power away from me. The only thing I can do myself (once I get set up) is paint, write, handle my finances, shopping and direct the people helping me. If it weren't for the computer, I would have an even smaller list. Since I can't handle, or put away my own things, I have to rely on my memory, for keeping track of everything. It's critical that my helpers follow through with my directions, so that there is consistancy and I know where everything SHOULD be. Even though my family, friends and aides try their best to follow directions, everyone has his/her own little quirks and their own standard of cleanliness. No one person does things exactly as I would. I've had to learn to bite my tongue many, many times and learn how to be flexible and to go with the flow. Despite the fact that I have vastly expanded my tolerance for patience, there I still some days when I just want to rip my hair out & scream.

There are some things that require demonstration. No matter how great, or poor my vocabulary is (in English or Spanish) there are just times when I wish I could just SHOW the person helping me what I want, or what I mean. At times it is exasperating having to explain, and re-explain myself. There are many times when I have an aide or nurse helping me, but I end up calling my mother or sister over, because they know what to do, or how to do it. It's much quicker (and less frustrating) to have someone who knows what I want to teach, or demonstrate to my aide how to do what I want. It saves me a lot of time and aggravation.

The other thing that has been so difficult for me since my accident is having to share my space (and all of my things) with other people. For one, I live in a two bedroom, two bathroom apartment, so there's not a tremendous amount of space. My mom and sister live with me and although they've gotten better over the years, their definition of "clean" and "organized" doesn't usually stand up to my picky expectations. Then you have to consider the fact that I have several aides and nurses, which also touch, clean and put away my things. It only takes one person to misplace something, and I'm stuck playing detective, hunting through the entire apartment. Plus, almost all the furniture and stuff (in general) in the apartment is mine. I expect the common areas which we share, like the living room and kitchen to be clean. It irks me when they're not because I feel embarrassed by a messy home (which my aides, nurses & visitors see) and it also ticks me off when I feel as though my things aren't being cared for properly. Although I'm not miserly or greedy, I do take pride in the things I buy and own. I think it's unfair (and frustrating) when I see my things being misused, or neglected.

Certain things that bother me, like crumbs on the counter, half empty cups, food wrappers, shoes and articles of clothing lying around, don't seem bother my mom & sister. It's little, in the scheme of things, but it's hard not to get annoyed or angry. I hardly ever see their room or bathroom, but do occasionally ask my aides and nurses about their conditions. I feel it's my responsibility (but get annoyed because they are adults & feel I shouldn't need to check up after them- or nag them) because it's my apartment. They might not be embarrassed by ring stains in the toilet, or toothpaste in the sink, but I am. In my house growing up (with my dad & stepdad) laziness, and sloppiness weren't tolerated. I used to groan & complain as a kid, but now I understand it's because they worked hard for what we had and wanted my brother and I to respect that fact, and help them maintain things.

I was taught (at home & at school) that people judge you by your appearance. If you dress sloppy and keep a messy home, people are bound to think less of you. First impressions matter (in matters of building personal and professional relationships and in getting a job), how you speak, carry yourself and maintain your home all reflect on the type of person you are. I've always held those lessons close to my heart. I always want to put my best face forward, in every aspect of my life. I try to take pride in myself (although it's challenging given my condition) and my things and want others to take notice of that fact.

It's frustrating having to share my space (although my family is very supportive & comforting in many ways- I'd much prefer to be independent). It's hard having so many other people touch me and my things. I try my best to maintain control over what I can, but know there's only so much I can do. I can't realistically hold my family, aides and nurses to my personal standards, and expect them to be as nit picky as I am. I know that's too much to ask, and every time I try, I only end up getting more frustrated, dissolutioned and agitated. My accident made me go from being a control freak, to having absolutely no control whatsoever overnight. It hasn't been an easy transition, learning to compromise, lower my expectations and having to just "let go" of certain things.

If anything, the biggest lesson my accident has taught me, is that control is just an illusion. We all think we have control over our lives, but in reality all the best plans in the world can be shattered in an instant. Control is a coping mechanism we each use, to give our lives order and purpose. Unfortunately, anyone can lose control (over everything) easier, and more quickly than most people care to acknowledge or realize. Even after everything I've been through, and as helpless as I am, I'm still guilty of trying to be "in control" of what little I can. I know at times it might be futile, or even possibly end up blowing up in my face (when things don't turn out the way I "planned"- nothing rarely ever does), but it's ingrained in my nature and a hard habit to break.

- Posted using BlogPress from my iPad

Monday, July 11, 2011

Sleepless Nights

I had a horrible weekend. As many of you know, I've been battling with insomnia nearly my whole life. My biggest problem has always been quieting my racing thoughts, especially when I'm stressed, or have something big to look forward to (good or bad). Noise has also always been an issue for me. I can't fall asleep to silence, because my mind will wander endlessly. White noise isn't distracting enough to quiet my thoughts. If something is too interesting, it'll grab my attention and compel me to keep listening. Even as a child, I needed something to distract me from my thoughts, just enough to lull me into sleep. In order for me to fall asleep, whatever I'm listening has to be familiar, without being catchy (like music, which I tend to sing in my mind). When I was young, I often listened to the same books on cassette, over and over again. Once I got a TV in my room, I developed the habit of falling asleep to the familiar sounds of my favorite movies (either VCR tape or DVD, set on sleep timer).

Once I've finally managed to fall asleep, the second problem I have is that I never seem to fall into a deep sleep. Even though I usually recall having several dreams each night (which are indicators of REM sleep), it's as if I'm always right on the verge of consciousness. From what I've read, the sleep cycle repeats after REM sleep. Since I know I have several dreams each night, that would suggest I am achieving deep sleep at some point. However, it hardly ever feels that way. The slightest noise will wake me up, and I often have to start the entire process of trying to fall asleep all over again. As an example of how light a sleeper I am, would be that (when I was still on my feet) I once woke up to the sound of water dripping onto my carpet. As soon as my alarm would ring in the morning, I'd shoot out of bed, wide awake. In fact, I used to get so annoyed, because my brother would often let his alarm ring and ring. Even through two closed doors, and a hallway apart, I'd end up charging into his room to wake him up, so I could attempt to fall back asleep.

Since my accident, my insomnia has only intensified. I'm forever trapped with my thoughts (often sad and/or unpleasant) and almost always stressed out over something. The first year and a half after my accident was the worst. I was definitely sleep deprived during that entire period. Between the stress, shock and trauma of all the sudden change and loss, and the constant interruptions and noise (aides coming to turn me every two hours, nurses coming in my room with medication, or to take blood, my roommate, the call bell and loud speaker) it was near impossible for me to sleep at all. Nights were terrifyingly lonely, and it is when I felt most vulnerable and trapped within my situation. I had few pleasant distractions, and much too much outside interference. Although the nursing facilities I lived at tried giving me oral sleep aides, I was lucky if I got a couple of hours of broken sleep each night. Being sleep deprived for so long, definitely contributed to my overall health and mood. I had been so tired, for so long, it really felt as though I was being tortured. By the time I finally got myself out of the nursing home, I felt as though I had been very close to having completely lost my sanity.

Since my accident, I probably slept the most soundly I ever have (within the past six years) during the first few months of living in my current apartment. I finally had peace and quiet. I only woke up out of discomfort (maybe a couple times each night) and could usually fall back asleep rather quickly, after my roommate would help me. My roommate (at the time) worked full time, and went to bed around ten o'clock or eleven. Thankfully, he was a pretty heavy sleeper and although it might've taken me a couple of rings (I had a call bell system hooked up between our two rooms-which are at separate ends of my apartment), he was able to fall back asleep immediately. In fact, he got so used to our routine, I'd almost swear he was sometimes sleepwalking. He'd come in my room, and without a word between us, he'd straighten out my legs (which move involuntarily, due to spasms), reposition my arms, fix my hair (which often gets on my face and is annoying) and give me a drink.

I think I slept so well those first few months, because of the lack of unwanted noise (I still have to listen to CDs or DVDs) and the fact that I was the happiest I had been, in a very long time. I had just achieved a huge feat, by freeing myself from the nursing facility and was feeling relatively healthy. Getting out of the nursing home felt like a high. It was the first big, positive achievement I had made, since my injury. I was also much more active during the day, in comparison to my life now. During that time I felt well enough to get up in my chair, for eight or more hours each day. I spent all day distracted, painting, reading and playing games on my computer. I also had more responsibility, making sure the groceries got bought, telling my aides what meals to prepare and sorting through my mail (my mom & sister have since taken over those tasks- which I don't mind).

Ever since getting a bedsore on my upper thigh, back in 2008 my health and stamina have been declining. I ended up needing to be bed bound for a few months, while the wound vacuum was attached to me. I tried to slowly rebuild my stamina, by getting up for only a few hours each day. However, I've never quite been the same as before the sore. Sometime during 2009 I started getting this mysterious chest pain (which I have still yet to find a definitive cause for, or solution to), which seemingly subsided a bit once I returned to bed. I also developed hemorrhoids around that same period, which I've often thought could account for why the chest pains seemingly bothered me more intensely and more frequently while being seated. While I'm sure my hemorrhoids play their part in my snowballing failing health, and definitely have made bowel program more unpleasant for me, they don't always correlate to the chest pain. There have been countless occasions where the chest pressure begins while I'm lying in bed, and persists for hours.

My bowel program has really started taking a lot out of me these past couple of years. During BP I definitely experience autonomic dysreflexia, and afterwards often feel lethargic, and achy for hours. For at least the last year and a half, to two years, I've been staying in bed all day after BP. Now the chest pains seem completely random, and although some of my AD symptoms lessen when I'm lying flat, the chest pressure flares up regardless of whether I've been sitting up all day or not. Getting up (other than for BP & shower) every other day has had a double edged sword effect on my overall health and stamina. My body just isn't used to getting up every day. When I do, I seem to tire much more quickly than I used to.

Ironically, even though I often feel lousy and more fatigued than I used to I actually have MORE trouble sleeping now, than in the recent past. One of the leading (and most annoying) reasons is that it has become increasingly more difficult to be comfortable, even despite the fact I'm laying down. I'm often uncomfortable, due to low grade fevers, the mystery chest pain, and on and off chills, or cold sweats. I deal with two out of those four symptoms every night. Even though I might be super tired, if I'm not comfortable I can't sleep. I end up asking my aides, mom, and sister to check my catheter, reposition me, fix my hair, give me a drink, take my temperature and scratch itches (on my face) at least a dozen times each night before I finally doze off. Some nights I listen to the entire length of my CD (I enjoy listening to the Harry Potter series) and have to ask my sister to restart it, before I fall asleep for the first time. Staying in bed has decreased my stamina for sitting, but when I do sit I'm often uncomfortable and want to lay down. It's become a lose-lose situation.

Over the past two years, I started taking sleep aides (again) in a desperate attempt to help take the edge off and help me fall asleep, despite any physical discomfort I might feel. I've tried Meletonin, Ambien, Tylenol-PM, anti-histamines, Remeron, and Xanax. I'm still taking the Remeron (which is an anti-depressant my doctor prescribed for it's drowsy side effect- one of the pills I first tried in the nursing home) at its highest dose (45mg) at bedtime. My doctor also added Xanax at bedtime, in hopes of helping to calm my mind (it's an anti-anxiety drug). Honestly, nothing has seemed to actually "knock me out" in the way I wish they would have.

Lately (within the last six months or so) my stress levels have been through the roof. I'm really at my wits end with my entire lifestyle. I've been seriously considering refusing treatment, and putting an end to my suffering. I've done a ton of research, investigating my options and have taken measures to protect my rights, and ultimate wishes. It has not been an easy to think about my death, and the effects my demise will likely have on my loved ones. As difficult it has been to share my thoughts with my family and friends, I have felt it necessary to be open and honest. Needless to say, I've had many sleepless nights; thinking about what I will have to endure in order to die, how my decisions will effect the people I love and constantly weighing the pros and cons of my day to to day life, against my guilty feelings of not wanting to hurt the people I will ultimately leave behind. My mind is forever jammed pack, full of difficult choices and harsh realities.

Despite having peace and quiet, the comfort of having my family and pets with me, my failing health and exhaustion with my situation has got me more stressed out than ever. I feel as stressed out now, as when I was newly injured. I'm just so fed up with feeling sick so often, and finding little, to no relief (even though I've put myself through a dozen different medical tests, and sought out various forms of help- spiritual, mental & medical) from anything I've tried. The reality is there aren't many options available to me to make my situation any better, or more tolerable. I've BEEN trying my hardest for six years. I'm just tired, in every sense of the word.

I realize that getting inadequate sleep can (and most likely is) feed into my feelings of being physically ill. I know that it is a vicious cycle. I'm desperate, to find something that will work better than what I've been taking. I'm back to where it is taking me hours to fall asleep, and I wake up several times each night. Each time I wake up, it can take up to an hour before I fall back asleep. Nights before BP are ALWAYS more restless. Some mornings I actually dose off for a minute or two on the toilet, because of how tired I am. When I get done with BP I often have to fight myself not to take a nap, because I'm afraid it will be harder to sleep that night. I end up napping half the time. It's an awful cycle.

Knowing that I was about to reach the maximum dose of Xanax (which is 4mg- I was taking 3mg), I decided to ask my doctor if I could have something stronger. I had asked for Valium; instead he prescribed Ativan. I didn't question his decision. I figured, as long as it's stronger and might have a better chance of "knocking me out" for a few hours (at least), it was worth trying. My doctor only started me on 1mg of the Ativan. I was doubtful it'd do anything (since I seem to have a high tolerance to medication), but took it anyway to give it a chance. The first dose I took was on Friday night (7/8). Instead of passing out, I felt wired all night and barely slept. Even though I felt tired the next morning, and a bit nauseous I forced myself to get up in my chair. Saturday night I took the second dose. Again, I didn't sleep all night (but I attributed it to the fact that a new nurse was scheduled to come in the morning). As soon as the nurse and my aide laid me down in bed after BP, my whole room started spinning.

I could barely tolerate them having to turn me back and forth to dress me. Waves of nausea came over me. I couldn't stand to lie flat, for fear of throwing up. I asked to be put on my left side, in the fetal position. I managed to keep down a bit of toast and some juice, and stayed on my side for several hours (until the pain in my shoulder became too intense). My mom went to the pharmacy and bought me something for the nausea (Emetrol-it's a gross cherry flavored syrup). I took some, but it probably wasn't as effective as it could've been since I insisted on chasing it with a bit of juice. I ended up sitting up in bed for a few more hours before the nausea started to really calm. At times, it was so bad I was in tears. If there's one thing I hate more than BP, it's nausea.

In the end, I managed to keep down some chicken noodle soup, some toast with peanut butter, ginger ale and another dose of Emetrol, before feeling near normal. I figured it wasn't coincidence that I had just started the Ativan, and began feeling so ill. I wrote to my doctor, letting him know about my hellish weekend and informed him I was going to discontinue taking the Ativan. He agreed, and told me I could switch back to the Xanax, and that I could up the dose to the maximum 4mg. That's what I did last night and thankfully, I think my hunch was right. Not only did I sleep well last night, but no more nausea today. A small victory.

I'm wondering how long the Xanax will keep helping, as I've obviously already built up a tolerances to lower doses. The whole ordeal has got me nervous to try anything different for a while. I'm praying the Xanax keeps working for at least a couple more months. I'm tired of being sick and tired of being tired.

- Posted using BlogPress from my iPad

Monday, July 4, 2011

Love Stinks

So, today is my thirty-first birthday. I'm feeling more run down, old, and exhausted than ever. I realize thirty-one is nothing, in terms of the average lifespan; but my life is anything from but average. I always thought by now, I'd be married with children. Before my accident, I was living on my own as a teacher, and had met the love of my life. He made me happier than anyone else I'd ever been with, and I truly believe we would still been together, if my accident never happened.

It's days like these that make me reflect on my life, my mistakes and my regrets, more so than ever. My birthday has become a day a dread, because I know the emotional mess it makes me. Every year I spend paralyzed is another year wasted, and so many wonderful missed opportunities. I had a terrific life, before my accident and experienced a lot in the first (almost) twenty-five years of my life. I know exactly what I'm missing out on, and how much better life could be. You can't miss what you never had, but I had nearly everything I'd ever wanted. Now, I feel stuck as a spectator to life, and watch everyone else around me enjoying the things I want most desperately, but can't have because of my injury.

Every birthday is a bittersweet reminder of what I don't have, and wish I did. Every year I watch more and more and more friends get married, and have babies. Very few people understand what my day to day life is like, and how very limited I am from doing things. It's easy to say "you can still do everything everyone else can, just in a different way." Those same people that say that, often don't consider all the work and effort that goes into doing the simplest of things. Everything I choose to do, requires the intervention of others. It gets tedious & annoying. Not to mention, there are just certain things I CAN'T do, no matter how you look at it. I can't have a normal sex life. I'm cut off from 90% of my body. Having someone else go through the motions of something I can't even feel, or enjoy seems frustrating & pointless to me. I can't experience a normal pregnancy, or care for a child. I can't even care for myself. Few people understand the isolation, and emptiness that I feel.

This past week, one of my ex-boyfriends (Mike) got married. Another just got engaged (Eric). It's not like I'm still IN love with either of them, but they will always hold special places in my heart. We were friends (and hung out from time to time, before my injury) and although I'm genuinely happy for both of them, I can't help but feel sorry for myself. It's been hard enough watching all the rest of my friends get married and start families, but it hit me really hard to know they are now both part of that list as well. Obviously, as ex-boyfriends & girlfriends we shared a special bond, beyond normal friendship. During our time together (with each of them) we had fantasized of a future together. It seems silly that it bothers me so much, but I think my situation has made me hypersensitive. If I were married and living a normal life, I probably wouldn't have given either situation a second thought. I would have been able to genuinely celebrate with them. However, that's not the case. In fact, I feel lonelier than ever...

I wasted a lot of time (almost six years) with someone (Joey), that I totally regret. I had lost touch with nearly all my friends during my time with Joey. He was very jealous, and controlling and I was foolish enough to put up with it. I left him the year before my accident. During that time I got back in touch with both Mike & Eric, since we shared mutual friends. It was great catching up on old times, and a being part of their lives again. They had each moved on and were dating other people, which was fine. It was just nice reminiscing and spending time with our mutual group of friends (two of my closest friends-that we all share-Christy & Moody). After the way I had cut ties with everyone, I had been thankful they were willing to let me be a part of their lives again.

Life moved on, and we all remained friends. Then I met the love of my life, Jimmy. We dated for five months before my accident. It was a whirlwind romance. Our time together was by far, the happiest of my life. When I got hurt, we had been only days away from moving in together. Instead, everything we had was violently ripped away. We tried our hardest to keep our relationship going, despite my accident, but it collapsed after six months of battling with an impossible situation. He had been forced to move back to PA. I had been stuck in a nursing home; completely crushed in every way. Although it killed us both, we decided to go our separate ways.

Over the past six years, I've never stopped loving him, or been able to get past what we had. My love for him, has kept me from being able to open my heart up to anyone else. For a long while (the first two years) we stayed out of contact with one another. During that time, I tried to force him to the back of my mind, to dull the pain. Then in 2008 we got back in touch, and tried to stay in contact as friends. We corresponded from time to time, and talked on the phone, and he came to visit me one time. All the while, he was in a serious relationship with someone else. Eventually, it just became too painful for me. No matter how hard I try, I just can't see him as a friend. Having him in my life, with her in the background, felt unfair to both of us. I decided it would be best if he let me go, and live his life without me.

It sucked, and I felt like I had lost him all over again. On the other hand, I had to face reality. He had moved on, and loved someone one else. I was only deluding myself into thinking there was any chance left, for a future for us. Being just friends was intolerable, and I've been through enough pain & loss, to not want to torture myself further. As much as losing Jimmy has hurt me, I've never held it against him, or thought less of him. I don't know if I'd be able to deal with being with him, if he were paralyzed. There's so much change & sacrifice that comes along with living with paralysis. I certainly don't want this life for myself, and feel selfish expecting him to give up a normal life, when he has a choice.

Long story short, Jimmy ended up breaking things off with his ex-girlfriend (not exactly sure why & am not going to presume it had anything to do with me). He contacted me, letting me know he was single and he has been back in my life for the past several months. He says he regrets leaving me, and that he does love me. Although that's music to my ears, he's not saying he's willing to try to be more than friends. It's all very confusing. On one hand he says he loves me, and wants to be a part of my life. On the other hand, he's not willing to make a commitment to me. For me, there's only two logical ways I can interpret his mixed messages. One could be, he genuinely loves me (as a friend), but is not IN love with me and wants the freedom to be able to sleep around and have a normal life, in that regard. The second possibility could be, he IS still in love with me, but is just scared.

He's said before that he wouldn't want to make any promises to me, unless he was certain he'd never want to leave again. My brain understands that, but my heart and body are exhausted. I feel as though I'm on the verge of "checking out" on this life and have absolutely NOTHING left to lose. If it were up to me, I'd want to give it my all, because I know my time is short anyway. I feel like I've been so hurt, and lost so much in these past six years, that I have nothing left to lose, and can't possibly be hurt more than I already have been. I'm trying my best to enjoy our time together, but it hurts knowing that there is a distance between us, that didn't used to exist. I feel his hesitation, but don't know the true reasons behind it.

What hurts the most, is feeling like I've never been good enough, for any man to want to be with me forever. I was with Joey for almost six years, with no ring to show for it. Mike was my first love, and although we talked about getting married, we were just naive kids. Eric never seemed sure of anything (and I'm so happy he finally found someone that makes him truly happy). Jimmy & I talked of marriage before the accident, and I do believe we'd be happily married- if I never got hurt. He even wanted to propose to me when I was clinging to life in I.C.U. and at Kessler. Looking back though, he was just just desperately grasping and scared of losing me. Neither of us understood how serious, or life changing my injury was at that point.

Here I am, thirty-one years old and feel completely isolated, devoid of affection and alone. I'm not talking about the love my family and friends give me. I'm referring to a mate, a companion, a second half, a soulmate. I'm missing that in my life, and feel very deprived not having that special someone. What sucks even worse, is that no matter how hard I try to not project my own feelings onto other people, I feel as though Jimmy should be that person; or at least I wish he was. Obviously I can't force him to feel, or do anything he doesn't want to. To push, or insist that he commit to me would defeat the point entirely. I want him to love me, for me, regardless. He either does, or he doesn't.

What really sucks, is that my whole life, friends, family and tons of men have told me how "special" and "beautiful" I am. I've heard those words a million times over. Everyone that has claimed to love me, at some point in my life has said, "You're an amazing person; beautiful, inside and out." Even since my accident, people have said those words to me. However, they all sound like hollow, meaningless words. If they were true, surely I could find someone to be with me. Then again, I know I'm so stuck on Jimmy, that I don't give anyone else a chance. However, he's one of the people in my life that is guilty of saying those exact words to me. At the end of the day though, words are just words. I often wonder if people just say things to make me feel good, or to give me hope, for my hopeless situation. It doesn't make me feel good to hear how "amazing" I am, unless those words are backed up with action.

I feel like no matter who I've ever wanted to be with, I've never been good enough for them. I'm supposedly this great, talented, amazing, beautiful person, but yet that's still not good enough to want to take a chance, or for anyone to have wanted to spend their life with me. I feel like with almost every relationship I've ever had, there's always been a "but" factor. "You're beautiful, but..." "You're terrific, but..." "You're my soulmate, but..." That hurts and really sucks. It makes all the pretty words, and thoughtful sentiments feel empty and false. I mean, if you truly believed someone was your "soul mate" wouldn't you at least try giving them a second chance?

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Saturday, July 2, 2011

Yes. Another Butt Related Blog...

Today I went to see the surgeon my physiatrist suggested to me, to get my hemorrhoids removed. Initially I was scheduled for the procedure on Wednesday, but they canceled and rescheduled for today. Three sleepless nights, a week of eating a semi- liquid, high fiber diet and I'm not hemorrhoid free. It took us (my mother & I) about an hour's drive to get to the doctor's office. We even brought my Hoyer lift along for the ride, in preparation for the visit.

The surgeon sat with me first in her office, for a consultation. I described my normal bowel regime, and told her about my daily bouts of autonomic dysreflexia, about my mystery chest pains, and about my (and my physiatrist & regular physician's) theory of how my hemorrhoids could be contributing to, and/or causing most of my symptoms. She agreed that it could very likely be the case, and said she would need to examine me. So me, my mom & an assistant followed her into an examination room. The three of them used my lift to get me onto the table, and rolled me on my side, for the doctor to examine me (I was smart and wore a skirt- for easy access). She poked around (literally) for a few moments and then said we could talk about options.

The exam itself, wasn't so bad. It was just the mild discomfort of pins, and needles and goosebumps, that I typically get with digital stimulation. Luckily, it didn't last more than a few seconds. She confirmed the presence of hemorrhoids, but said we should discuss pros and cons, before deciding on surgery. I had assumed (based on what my physiatrist had told me, and from my phone conversation with the receptionist) that I was going to have the surgery today, during my visit. The doctor explained that normally the surgery would take place in the hospital, and I'd need to schedule a separate appointment, if that's what I decided I wanted to do.

The assistant and my mom helped to put me back in my chair, and the doctor told me her assessment. She said that the hemorrhoids I have internally are normal, given my situation and the typical flaccidness present with my type of injury. She said that given the fact that I have to have a bowel regimen, and digital stimulation, that those internal hemorrhoids would be expected. She said since my colon wasn't prolapsed, and the external hemorrhoids I have are small "tissue flaps" she wouldn't recommend surgery.

She said that I had several options to try and combat the AD. First, she said the external hemorrhoids were minor and not typically painful (my mother & other people I've talked to that have them tend to disagree on that point). She said I should just continue to treat them with the creams and suppositories (Anucort) I've been using. She said one of the causes for my AD could be the fact that I need to go to the bathroom every day. She explained that once the stool moves into the colon, it could be sending my body signals (even though I don't feel the actual "urge" to have to go). She said that I could try going back to doing my bowel program every day. That of course, I answered with an absolute, "No way!" Secondly, she suggested I could try experimenting with my bowel program medications. She said since I'm taking Senekot daily, that it helping to push the stool down more regularly. Of course, the risk with only taking my Senekot every other day, is that I could potentially become constipated. It's a risky, but more favorable option to try.

The third thing she suggested was switching from using the magic bullet suppository, to an enema based bowel routine. This is one option my physiatrist also suggested. The surgeon didn't specify a product, however my physiatrist did. I mentioned the Enmeez mini-enemas in my last blog, and got quite a bit of feedback about the product, from other quadriplegic users, on the Care Cure and CDRF forums. The overall consensus of people that responded (about a dozen) said that they preferred the "Enmeez Plus" (which has an added numbing agent) to the magic bullet, and that once their bodies acclimated to using it, they did have effective results, with less AD symptoms. It even specifies reduction of AD on the packaging, as being one of the benefits. The only "catch" to using the Enmeez, is that I would need to allow for time for my body to get used to the new method. Several people warned that it took them multiple uses, before they started seeing consistent results. That means, I'd have a period of unsuccessful BP days, which could entail lots of additional digital stimulation needed, and the threat of having accidents.

The fourth thing she suggested was trying a new medication called "Vasculera", which is an FDA approved "medical food for the dietary management of the metabolic processes of chronic venous insufficiency, one of the underlying causes of hemorrhoids." She said she wasn't sure how expensive it was, of if insurance (Medicaid/Medicare) would cover it, but gave me one sample and a coupon to try it. She said it doesn't have any known adverse side effects, and it could help the decrease the AD a bit. That was her most appealing and easiest suggestion.

Her last suggested option was getting a colostomy. She said, since I hated having BP so much that I should consider it. I gave her my long laundry list of reasons as to why it is not something I'd consider (see previous blogs). She poopooed (no pun intended- ok maybe intended) each of my reasons, as if they were no big deal. She went on to tell me about several patients she had performed colostomies on, and proceeded to show me several different bag styles. She said of all her patients, only one women ended up hating hers and asked for it to be reversed. Again, I stressed the fact that I'd still need to get the mucous buildup digitally removed. She said not necessarily. I pointed out the fact that I didn't want to be able to pass gas through two openings. She fluffed that fact off, saying it hardly happens.

She then continued to go on, and on how "since you have some arm function, you might even be able to apply, or remove peel and stick style bags yourself- if you had the right help." She rummaged through her cabinet to find an example. I pointed out that I have no wrist, hand or finger control or movement. She replied, "yes, but with adaptive equipment and the right help (perhaps a good occupational therapist) you might be able to do some of the care yourself." By that point, I was getting frustrated and had heard enough.

I just don't get some doctors (or people in general). Can someone please explain to me, what is the f*%#ing point of going through the trouble of having SOMEONE else strap on an adaptive handcuff, so I can "maybe" tear off a bag of my own feces, only to then need that same person to then have to hand me a clean bag, that I can "maybe" reattach to ANOTHER ARTIFICIAL hole in the side of my body?! Number one, who the f&$# am I supposed be fooling; myself or my "assistant"? I'd still need help with every step of the process, down to the fact that someone else would need to strap the damn adaptive device to my hand. Number two, someone else would still be smelling and cleaning up after MY poop! What is the point of going through five extra steps, to have to have help with each step. Only a deluded person would call that "independence" or "self sufficient." It's a damn joke! It's like saying "I can feed myself." Sure, if someone else prepares my food, puts in n a plate, cuts in up, puts my adaptive hand cuff with fork on my wrist, sits me at a table, puts a plate guard on my plate, and places said plate in front on me; then, and only then, I can pierce the food with fork and get it into my mouth. In the time it takes to set up that ridiculous charade my foods cold, and I could've easily been fed, and finished eating.

I tried really hard to keep my cool. I did mention the fact that I'd still need assistance. No matter how you slice it, colostomy or BP I need other people involved in handling my feces. How hard is that to comprehend? The whole point, is I am a private person. I don't want other people knowing when and how I poop; or urinate for that matter. I'm sick and tired of needing people for every tiny, minuscule detail of my daily life. I'm fed up with having people in my face, touching me, invading my personal space. I don't want to be fed, clothed, bathed, poked, prodded and everything else in-between. I just want a NORMAL life, of independence and privacy. Paralysis FORCES me to accept help and I hate it! I'm especially tired of hearing about how other people live this way. Yeah, and you know what? A good majority of them are as tired, and disgusted as I am. We are stuck, with limited choices. It's take it or leave it. I'm very close to leaving it.

Like I've said a million times before, "live a few days in my shoes, and then get back to me, on how I SHOULD live, and what I SHOULD do." Until you manage to do that (by the way, I wouldn't seriously wish my condition on my worst enemy), please spare me your critiques and judgement. In the meantime, I'm going to try the Vasculera and discuss the Enmeez with my one nurse. I just lost two of my regular nurses for most of July and August. My BP schedule for July is still half empty, so I'm hesitant to start a completely new regimen. I think I might wait until I know I'm going to have a consistent schedule, with nurses I trust.

I did ask the surgeon about the bentyl (for my IBS) my physiatrist suggested. I had mentioned it to my regular physician this past Tuesday, and he said it could cause constipation. He advised I wait until I go see the GI. I called the GI I saw back in November (in the hospital), to schedule an endoscopy, but he no longer accepts Medcaid/Medicare. So I have to find someone new to see. The surgeon said she wouldn't recommend bentyl, saying she didn't think it was effective. So I'll have to wait and see about any suggestions for the IBS until I follow up with the GI.

Related links-
1. http://www.gastroendonews.com/ViewArticle.aspx?d=FDA%2BUpdate%2B%26amp%3B%2BProduct%2BNews&d_id=183&i=March%2B2011&i_id=715&a_id=16840

2. http://www.enemeez.com/ct/store/productInfo_mini_plus.asp

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