Monday, June 27, 2011

Foolish Girl

Innocent dreams, of a foolish girl
Blinded by a false sense of security
No control, no planning could ever make it be

One mistake, shattered lives
Body broken, beyond repair
Life forever changed, thrown into despair

Dreams disintegrate before my eyes
All I can do is lay and cry
Losing everything I've loved; what was once mine is gone

Can't repair the damage done
No matter how hard I try, how loud I scream
Life is harsh, cruel, and mean

I'm left inside a broken shell
Forced to live within my personal hell
Wishing I would wake from this nightmarish spell

My life is not a dream
Every day I'm faced with harsh realities
All I want to do is run

Devoid of joy, of hope, of fun
Surrounded by everything I want, so out of reach
Imprisoned in this lonely keep

Deprived of touch, of warmth and affection
Living has become it's own infliction
Every day, harder than the day before

I can't take this pain anymore
I long for everlasting sleep
I just want to be at peace

- Posted using BlogPress from my iPad

Saturday, June 25, 2011

Haiku: Death

Death is calling me
I long for its endless sleep
To breath my last breath

Wishing to be free
Tired of this misery
Take me to heaven

God, be merciful
Release me from this rough life
End my suffering

I am so tired
Please don't let my eyes open
Take me in my sleep

I've suffered enough
Carry away my burdens
Ease this awful pain

Let my soul escape
I am chained to this body
Give me my freedom

Death I pray for you
I would gladly embrace you
My only savior

- Posted using BlogPress from my iPad

Tuesday, June 21, 2011

Looking For Feedback, Regarding BP

I've been having a lot of issues, regarding my bowel program and a few other things. Today I went to Kessler, to meet with my physiatrist, in hopes of getting some answers. She gave me a few things to think about, and answered a few question.

I'm a C4/C5 complete quad, with no functional mobility. I'm hoping to connect with some other people, with similar injuries, to see if they've experienced similar problems. My main questions revolve around my BP. I've posted this on the Care Cure Forums & CDRF forums. I figured between those two sources, and my blog readers, I might be able to get some feedback, from others in my situation. It's not that I don't trust my doctor's advice, it's just that making suggestions, & actually living it, are two different things. What sounds practical on paper, isn't aways the case, in reality.

Anyway, here's what I posted:

 I've been experiencing autonomic dysreflexia a lot lately (I have daily episodes-more so on BP days), and have been miserable. Two of the biggest culprits to my daily bouts of AD (sweating, chills, cold sweats, headaches, etc.) are my bowels and the fact that I have hemorrhoids. My physiatrist confirmed that my diagnosis (from before my accident) of having irritable bowel syndrome, CAN still be creating pain, and discomfort I don't feel, however my body interprets as AD. She said even though I have a neurogenic bowel and bladder, the IBS might be creating a lot of my AD. In terms of the chest pain I get, that we haven't been able to determine a cause for, she suspects it's GI related (however did say there is also a chance it's nerve pain). She recommended I follow up with a gastroenterologist to discuss getting an endoscopy, and also recommended I try taking bentyl for the IBS. She suggested I have the hemorrhoids surgically removed, as they can definitely cause AD. She also wants me to get a urodynamics test done, and spoke to my urologist. 

The other thing she discussed with me is my bowel program.  I absolutely HATE having to do it. It is both physically, and emotionally taxing on me. However, my only other "option" is getting a colostomy, and I absolutely refuse to do that. 

Anyway, the bowel program is very uncomfortable for me, and creates A LOT of AD symptoms for me. I described to my physiatrist how we've been doing my BP (using the dibucaine ointment, with magic bullet suppository and digital stimulation). I explained it can take up to two hours to complete, and that the nurses have to digitally check me multiple times. Every time the nurses do the digital stimulation, it creates AD. I do my BP, every other morning, on a commode. My blood pressure is initially very low (as low as 70/50) and usually rises to normal ranges (100/60). By the time I'm finished with BP, I'm achy, have the cold sweats and very fatigued. I take my shower, and just want to rest for the remainder of the day. It almost feels like having the flu. I hate it.

My physiatrist said that my nurses should only be doing two digital stimulations (once initially & once to check if I'm finished). She said, if I require more than that, that I should consider upping my BP related medications (senakot & Colace). I know several people that have BPs and know for a fact that they also have their nurses do the digital stimulation multiple times. I'm hesitant to start messing with my medication doses, because I don't want accidents. She did say that the magic bullet suppository, although effective, is known to create AD. She suggested I try using a product called "Enmeez" and gave me a few samples. She said she had a lot of patients with AD issues that preferred using the Enmeez to magic bullets. 

I know the nursing agency I use is familiar with Enmeez, because my case supervisor gave me some samples a while back. I'm VERY apprehensive about trying it, only because it is like an enema. I'm not sure how the nurses will be able to administer it, while I'm sitting on the commode, without making a huge mess on the floor. We normally put a pad down on the floor, in front of the toilet, for when the nurses check me. If I start to go, before they push me back over the toilet, it is very bothersome to me. I'm really traumatized by the process. I find having to have help going to the bathroom, humiliating and degrading. I'm so sick of BP in general. I hate needing to do the digital stimulation so often, however I'm not sure how else, we can be positive I've finished going (or if have gone adequately) without needing to do it.. I'm curious to see if the Enmeez with work better, that the way we are currently doing my BP. I'm willing to try. 

I'm wondering if anyone else with a similar injury, that has to have a BP, would be willing to share their thoughts, based on their experience? 

1- I've only talked to a couple of friends regarding their BP, and they said they also need to get "checked" (digitally) multiple times during their BP. I'm wondering if my doctor was wrong, in that respect. 

2-I'm also curious to know if anyone has tried using the Enmeez product, instead of using a suppository, and if so how they used it (set up- on a commode, or in bed) and if they found it caused less AD? 

3-I'm wondering if anyone else who has had a history of hemorrhoids, has had them surgically removed? If so, did you find a decrease in AD episodes, and did the hemorrhoids return? 

4-Does anyone with a high level injury also have IBS? If so, have you tried bentyl? I've tried probiotics and the drug "pamine" (prescribed before my accident) and neither helped, or offered relief. 

Any feedback would be greatly appreciated! Thanks :)

Sunday, June 19, 2011

My Life Revolves Around Shit

Many of you that read my blogs, know that I struggle A LOT with bathroom related issues. Thanks to my accident, I've been living as a high level (C4/C5 complete) quadriplegic, for the last six years. I have no functional mobility whatsoever, and rely on help for EVERY aspect of my daily life. To complicate matters, I have a diagnosis of having irritable bowel syndrome (IBS), since before my injury. I'm  honestly not sure if my IBS is still (considering my injury has left me with a "neurogenic" bowel and bladder) contributing to my daily woes, and discomfort, but am anxious to get some answers. 

My regular doctor, and doctors I've seen at the hospital, only ever postulate and hypothesize, based on my theories, and descriptions, but never seem to have clear cut answers, or definitive reasons for why I'm so uncomfortable, and sick, so often. I realize that the fact that I can no longer directly feel what's causing my symptoms, makes it difficult for my doctors to draw conclusions, or pinpoint things, but honestly I feel like the vast majority of the time, they can't give me answers because they don't understand the nature of spinal cord injuries, and its effects on the body in general. I feel like, most times my doctors are treating me, like they would the average able-bodied person, and that is why I'm not getting any answers, or finding any relief. I'm not average, and my body no longer works according to the "normal" rules of science. 

My spinal cord injury has severed the connection between brain and body. The messages I do receive are messed up, mangled and chaotic. When my body experiences pain or discomfort below my injury, it responds by signaling me with autonomic dysreflexic (AD) symptoms. AD symptoms vary (headache, sweating, chills, cold sweats, tingling, phantom pain, chest pressure, muscle spasms & fevers), but on the whole, I've come to recognize them, and have a handful of common known triggers. AD episodes can be life threatening, because quite often, my body reacts to pain I can't feel, by elevating my blood pressure. The elevation in blood pressure, is what creates the secondary symptoms, like sweating, headache and chills. When I begin to feel symptomatic, I know to ask for help, to try and alleviate the cause of the pain (such as my catheter being pinched, or my clothing being wrinkled). Gone unchecked, and unresolved AD can lead to stroke and/or death.

Unfortunately, one of the biggest causes of AD for me, is my bowels. I am stuck in a vicious cycle, of never ending discomfort, and pain. My spinal cord injury, and my paralysis have made me a literal prisoner to my body, and its needs. I must eat to survive. Likewise my body must expel waste. Normally, it's not something the average person puts much thought into, or has cause for distress. For me, I feel as though I have become a slave, and prisoner to the simplest of bodily functions. There is no escaping it. It has become so troublesome and uncomfortable for me, that something that is normally simple, private, and in the back of the mind, has instead become the center for which, my life revolves around and is dictated by. It is awful. 

My paralysis leaves me with so few choices, none of which are pleasant. I must eat to live; that is a given. I must go to the bathroom; that too is a given. However, nothing in my life is that simple, because I cannot do anything on my own. I need help for everything, including eating and yes, even shitting. For the past six years, I've endured having a bowel program (BP), in order to get rid of the waste I must expel, in order to keep living. It's an awful ordeal, that involves a nurse manually removing stool from body, every other morning. Since I no longer feel the sensation of needing to "go," or the ability to bring myself to the bathroom, or even the ability to "push" it out, those ordinarily natural processes must be FORCED into action. 

In order for me to go to the bathroom (shit), my nurse needs to insert a suppository, and digitally stimulate my rectum into going. I'm forced into sitting, strapped to a commode for one to two hours, while my nurse manually stimulates, checks, and rechecks my colon, every ten to twenty minutes, depending on how quickly I go (depends on amount, and consistency). Although I can't feel the digital stimulation directly, it creates AD symptoms. The process is both physically, and emotionally taxing. Every time my nurse checks me, it sends a chill up my spine, creates goosebumps, sweating, and discomfort (sometimes accompanied by chest pressure and nausea). On top of which, my overall condition and constant stimulation, has created chronic hemorrhoids. Again, even though I don't feel the pain of the hemorrhoids directly, I'm positive they contribute to my daily bouts of AD. 

The frequency of having a bowel program, depends on the individual. When I was initially injured, I had to have it every night (policy at the nursing home I lived at). They made me do it in bed, after my showers, laying on my side. It was disgusting, painful (for my shoulders) and I hated it. Since moving to my own place, I switched to having it done every other morning, on the commode (over my toilet). Although it has been a big improvement, being able to do it over the toilet (in the privacy of my own bathroom- as opposed to in a bed, in the same room as my roommate) and before getting showered, it is still uncomfortable, and far from ideal. Needing to have ANYONE help me in the bathroom, or with personal hygiene has been horrific, and has never gotten any easier to deal with. 

Unfortunately, I don't think I could get away with having it any less than I already do. I know a couple of people (with similar injuries) that do their BP every three days. I wish I could do that. The thing is, I suffer from AD symptoms every day; having several episodes each day (sometimes the symptoms last for hours- like sweating, chest pressure and chills). I've already ruled out a million more serious possible causes, through testing (EKG, ultrasounds, CAT scans, blood work & X-rays). Ninety five percent of the time, I have someone check me for visible problems, and we come up empty. That leaves me thinking that most, if not all of my AD is caused by something to do with my lower hemisphere. I know for sure that my hemorrhoids and gas are two big culprits; neither of which I can do much about.  

I wonder if my IBS still has an impact on my body. No one has been able to give me a definitive answer. I'm going to see my physiatrist on Tuesday, in hopes of getting some clear cut answers. I know when I was on my feet, I went to the bathroom every day (sometimes several times). If my colon is still spastic, it could certainly explain why I'm dysreflexic so often. That said, even if she tells me, "Yes Christina, your IBS could be creating AD and offer an explanation as to why it's been so difficult for you to regulate your BP" it doesn't really offer me any relief.  I don't know exactly what I expect for my physiatrist to tell me, except if my theory is right, or wrong. Either way, I'm pretty much stuck with the situation I have. I guess I just want to hear her say (essentially) whether I'm screwed, or not, and if she has any suggestions that I haven't yet tried (doubtful). 

I've tried taking probiotics to help with my IBS, and prescription medication; neither did anything. I've tried pinpointing food triggers, but am never successful. The only definite trigger for my IBS flaring up, when I was still on my feet, was anxiety. I can't say that I've noticed a definitive correlation, since my injury. Given my condition, and everything I have to deal with on a daily basis, I'm pretty much ALWAYS under a high amount of stress and anxiety. Not to mention, my AD has seemingly gotten worse, and more frequent, as time has gone on. I would've thought if stress and anxiety alone were the causes, I would've had more issues when I was newly injured.

That leaves me thinking that my body has gotten to the point where it wants to "go" every day, and that's why my AD has gotten to be so unbearable. If that's the case, it would also account for why I have occasional "accidents", despite successful having BP (or why it's often hard to regulate at all-despite taking consistent bowel related medication and eating healthy). As it is, I've already had DOZENS of nurses have to help me with BP, over the past six years. Every time I lose a nurse and have to train a new one, it is stressful, and traumatic. I absolutely abhor BP, and dread it. Every other night, I'm full of anxiety and despair, knowing I have to do it the following morning. I've gotten to the point where, even if my body is demanding to go every day, I just can't handle it emotionally. This past year, I've gone through several nurses (I use an agency called Bayada- Medicare covers the sessions) due to circumstances outside of my control. In fact, tomorrow and Thursday I'll be meeting new nurses, because two of my regular nurses won't be here in July (personal reasons & vacation). That's two more people that have to see me naked, touch me and witness me going to the bathroom. I'm dreading it, and wish I could say "No! Go away and leave me alone." 

Paralysis doesn't let me say "no." It doesn't leave me with many choices. I need to go to the bathroom, in order to live. I need help, in order to go to the bathroom. Knowing I'm going to be training with TWO new nurses, has just added salt to my wounds. Some people have asked me, "Why don't you just hire a private duty nurse, and not use a nursing  agency?" One, my nurses technically are "private duty." The agency assigns them to my case, and Medicare covers the set three hour block of time, every other day. Two, in order for Medicare to pay for the service, it has to be done by a qualified nurse. I can't just pluck someone off the street and train them, like with my aides. A bowel program (at least in NJ) is considered to be a treatment, which involves "skilled nursing care." Having a nursing agency on my case, makes the most sense, because if a nurse quits, calls out sick, goes on vacation, moves, or has a family emergency (which have all happened to me already), there are backup nurses that are already trained. I have to have BP, regardless of my nurse's situation, therefore I can't afford not to have a backup in place. It's a necessary evil. 

I have two options on the table. One, I can stick with accepting a BP: which involves nurses, which I hate which is long, which relies on a schedule, which is physically and emotionally taxing, and which is highly intrusive and invasive. Two, I can get a colostomy. I've mentioned in previous blogs why I don't want to even consider a colostomy. To me, it's not even an option worth mentioning. As much as I despise the idea of getting a colostomy, and have sworn to myself I'd never get one, the AD and BP are really wearing me down. I honestly don't know how long I can keep living this way.

Out of desperation, I decided to look even deeper (than I already have in the past) into what it would be like to get the colostomy. So many people have irritated me, by making it seem like getting one is such an "easy" decision, and better option. Sure, it's easy for OTHERS to flippantly suggest I undergo ANOTHER surgery. It's easy, when YOU aren't the one getting sliced open. It's easy when you aren't the one that will have to live every day, for THE REST of your life, with a bag of shit strapped to your side. It's easy, for the able-bodied people, who have told me about their personal experiences with having HAD (key word- their colostomies were eventually reversed- once I do it, the likelihood of going back to having a BP, is slim to none) a colostomy. It's easy for all the quads who talk about having one, that CAN TAKE CARE OF IT INDEPENDENTLY. 

The more I've read about colostomies, the more I've discovered as to why, it would NOT be a better option for me. First, I would need to undergo surgery, which would require several days in the hospital, afterwards for recovery. The absolute LAST place I want to be at this point, is in the hospital. There is no guarantee that a colostomy would alleviate my AD. I'd be creating ANOTHER artificial opening in my body (in addition to my suprapubic catheter), that would need to be maintained, and could become infected. The bottom line is, I'd STILL need help with going to the bathroom. I'd need a nurse to clean the stoma, change the bags, and/or irrigate it. No matter what I do, someone else has to handle, and clean up after MY shit. It's not like the colostomy would care for itself.

As much as I hate BP, at least it's over and done with, in a set amount of time. Yes, I do occasionally have episodes of incontinence. However, from what I've read, there is nothing to guarantee that I wouldn't have accidents with a colostomy. One, the bags can bust or leak (as I've had happen with the catheter). I'd need help cleaning that up. Two, even though they'd be re-routing my colon, mucous builds up in the rectum, and needs to be digitally removed (at least once a month- most people fail to mention, or know about this). Three, did I mention, I'd have a bag of shit strapped to me, all day, every day?! Four, some people do "cap off" their stomas and prefer not to wear bags, instead they essentially flush the stool out (similar to an enema, but through the stoma). However this only works once your body has acclimated to having the colostomy (which depends on the individual and can be effected by diet). The other catch, is that this capping off can create AD (since gas and stool build up) and also tends to lead to more frequent accidents. Even the irrigation process itself, could potentially create AD. Not to mention, like I pointed out earlier, someone else would need to be doing all of the care for me.

So basically, I'd be taking a huge gamble, with the high probability of having to deal with most of the problems that I already have with BP. Only, I'd have the added nuisance of having another artificial hole, need to get (and rely on) more medical supplies, and have another bag of bodily waste strapped to me. I'd still need to have help in that area, and have strangers in my business. There's just no avoiding that. Instead of being embarrassed about wearing Depends, I'll be embarrassed by the bag. Oh, and did I mention the added "treat" I discovered about having a colostomy?! You pass gas out of your side, in addition to your ass. Lovely! Double the embarrassment, lack of control and shame. Thanks, but no thanks. It looks like I'm stuck with BP. 

Wednesday, June 8, 2011

So Much For My "Good" Day

This morning I had to shlep up to Newark (an hour drive- and very bad neighborhood), with my mom, to go get my psychiatric evaluation done. Luckily, we didn't hit any rush hour traffic, or get lost on the way. We even got a great parking space, and the facility was very wheel chair accessible. Despite hating getting up early, and the long drive, I'm grateful to Jeanne (the palliative care consultant I've been talking with, for several months now) for referring me to Dr. Shihabuddin. She is not only already affiliated with the VNA, but she also accepts Medicare and has experience working with hospice patients.

Our meeting went very well. She was very objective, and made me feel justified, and validated my reasons, for feeling the way I do. She said she would certainly declare me "mentally competent," which is crucial. That ensures my advanced directive, and DNR will be upheld, and respected, without contention. She also said she did not feel I was clinically depressed. She agreed with me, that my issues are issues of conviction, that they are directly related to my physical condition, and my personal standards for quality of living. It felt so good to hear those words. I just wanted to hug her! Thank you, God, someone who can see my situation, with unbiased eyes, and give me a logical, rational validation. I'm not crazy, nor depressed.

That said, she fully acknowledged the difficulties of my situation. She understands my exhaustion, and frustration, but also my deep care, concern, and worry for those closest to me; my mom especially. She and I discussed the medical implications, of refusing various levels of treatment, and she gave me several medical recommendations, in terms of my medication, and hospice care (if/when I need it). She also took the time, to include mom in the dialog, and explained her diagnostic evaluation to mom, stating that my issues are a matter principle, and influenced by physical suffering, not depression. She acknowledged how hard this all must be for mom, and explained that it was important I have this evaluation done, because no matter how badly I'm suffering, there will always be the concern, on the part of my doctors, that my family might try to fight my wishes, or sue after my demise. Mom said although it makes her terribly sad, to think about losing me, she would respect my choices. I already knew that, but I felt relieved after our meeting.

Emotionally, it was a rough morning, but productive, and necessary. I am at peace with my decision, to no longer wish to be hospitalized, or take antibiotics. I'm tired of fighting. I feel like if I get sick, my body will either fight it, or it won't. If I'm "meant" to live, I will, as long as I possibly can. Like I explained to my mom, and Dr. Shihabuddin, ideally I will get sick, and that will be out of my control. Whether to treat it, or not, is a mute point, for me. I rather not have to resort to refusing food/water, to hasten my own death, but if I get sick, I'm hopping on the train out of here. I'm satisfied with what I've accomplished, given my situation, and I'm tired of being sick. I feel like I've had one foot in the grave, for six years now. I've been cheating death, through medicine, and unnatural, painful treatments, for the sake of my loved ones, and at a terrible emotional and physical price. Dr. Shihabuddin recognized the fact (I'm grateful) that living for the sake of others, sacrificing my own happiness, and against my will, can not be sustained forever. When the time comes, that I can't bear this life another day, I'm ready to go.

After leaving Newark, I decided I wanted to go clothes shopping. I had thought about buying a few new things for the summer, the other night, but decided against it. Shopping for clothes online is tough, cause women's clothing sizes are so inconsistent. I have clothes in my wardrobe ranging from extra small, to large. Many times I end up having to send things back, and forth through the mail. I figured, since it was still early in the day, and I was feeling relatively comfortable, we might as well swing by "Mandee's" on the way home.

The store is a favorite of mine, and close by my old apartment. As usual, it was bittersweet, being in my old stomping grounds. I always feel a twinge of pain, rolling into a place, I once walked in. Before my accident, I was making good money, with minimal bills. I was definitely a bit of a shopaholic (no debt though), and clothes have always been a weakness. I used to hit Mandee's once every couple of months. I'd spend hours, trying on STACKS of outfits. I can remember walking back to the dressing rooms, my arms so full of clothes, I could barely cary it all. I loved dressing up, and buying new clothes.

My wardrobe is still pretty much busting at the seams (no pun intended), despite giving away bags, and bags full of my "pre-accident" clothes, that I can no longer wear (short skirts, shorts, bathing suits, short dresses, etc), or have no occasion to (business suits, cocktail dresses, clubbing clothes, etc). I've given away countless pairs of jeans, high heel shoes, skirts, you name it. Most of my wardrobe now, consists of easy to wear (and put on me) casual stuff, like baby doll tee shirts, and sweats, or stretch pants. I seldom go out, and have few occasions to dress up anymore. I pretty much dress the way I used to dress, to go the gym, with the rare exception to my trips outside. Even so, my draws are still over flowing, and my walk-in closet is packed.

Today was like I said, bittersweet, but also fun. No matter how awkward I might feel, being pushed around, not being able to easily access the whole store (clothing stores are always too crowded with racks, and hard to manuever in a wheelchair), or not being able to try clothes on, there is still that piece of me that enjoys it. We probably spent an hour, looking through racks of clothes, and I ended up with two new skirts, a pair of capris, six new shirts, and two new pairs of sandals. I'm officially ready for the summer; if I actually push myself to go out.

After shopping, mom and I stopped at Wendy's for lunch. I love fast food (although my stomach & hips might not agree), so it's always a welcomed treat. I try to choose small portions. It was yummy. All in all, it was a shaping up to have been a rare "good day." I don't get many of those anymore.

I should've known better, not to jinx myself. My good mood was shattered, a few hours ago, when my sister decided to open up today's mail. We had had a routine maintenance inspection, of our apartment, yesterday. Today we got a letter, citing us for a pet violation. Apparently, the complex (we live in a "luxury" apartment complex) has a "two pet" maximum, that we never realized. As it is, I have to pay $50 rent, per pet, per month. That's on top of the non-refundable $350 I had to initially shell out, for each of them.

When my ex-roommate Steve decided to move, and my backup roommate bailed out last minute, three years ago, my little sister came to my rescue, and moved in with me. She had already had a dog, Precious, from before my accident. I was more than happy, to have her join us. Shortly after they moved in, I adopted my cat Tommy. I honestly never realized there was any limit, especially given the fact that I am paying rent for them. I mean between the non-refundable fees, and monthly rent, I have more than covered for any damages they might create. The thing is, they're both well cared for, and neither of them is destructive.

When we got our second dog, Naama (mini-pin) I admittedly, didn't report her. Frankly speaking, because I'm on a fixed income, and was hoping not to have to pay another $50 per month. It has finally caught up with me, thanks to this recent inspection. I would've never adopted her, if I knew about the rule. However, now I'm totally attached to her. She's the closet thing I have to a kid. She's my baby, and I love her.

The complex sent us two conflicting letters, that have left me perplexed, and totally bummed out. One letters says, congratulations on your new dog, please register her on your lease, and that they will begin charging me, the $50 pet fee, on my upcoming statements. The other letter says, we're in violation, and must get rid of one of my pets. Naturally, I'm heartbroken.

I contacted my lawyer, to see if there were some way I could fight it, but he says they have the right to enforce it, if it's in my lease. So, I decided to resort to old fashioned begging. I wrote them a letter, admitting my error, and said I was sorry. I also explained the fact that I am quadriplegic, and practically bed bound. I told them the truth, that my pets are one of the few things that bring me joy, and comfort. I said that my animals were not destructive, and that I'd be more than willing to pay the extra fee. I pointed out the fact, that they have therapeutic value for me, and that I could ask my doctor to write something, to that effect. It is the absolute truth, that they improve my quality of life. I'm hoping and praying that whoever reads my letter, will be compassionate, and willing to make the exception.

So much for my "good" day. Now I'm going to be anxiously stressing out, until I receive their answer. If we do have to put one of the animals up for adoption, we've decided on Tommy. It makes me so sad, to think about losing him. He's such a good, unique, smart, funny cat. I really love him.

- Posted using BlogPress from my iPad

Monday, June 6, 2011

Life Is Unpredictable & Full Of Irony

Today marked the six year "anniversary" of my accident. It's certainly not an anniversary worth celebrating, but one that is impossible to ever forget, or ignore. This year brought with it a twist of surprise, and added sentimental value. Six years ago, one simple mistake, would change my life forever. If my accident has taught me anything, it is how very unpredictable life can be.

This year, marks the first completion of the weekly cycle. Meaning, this is the first year, since my accident, where the date, and day it falls on, is the same as on my accident. My accident happened in the very early hours, of Sunday, June 5th, 2005. This year, June 5th, also landed on a Sunday. Last night, I couldn't help but feel an added twinge of grief, as I replayed the memories of that "fateful" Saturday night, where my life got flipped upside down. To this day, I'm unsure of the precise time of my accident, but know the first hours of that Sunday, were spent in the Emergency room, terrified of what was happening, and in shock of what I'd done. That weekend, my last hours on my feet, and my first few hours paralyzed, will forever be etched into my mind. It is a day I wish I could scrub from memory.

Ever since the moment my neck snapped, I have been replaying those last few memories, on my feet, in my head, and fantasizing how different my life might be, if I had never gone to that party, never drunk, or never dove. I have reviewed, replayed, relived, analyzed, questioned, and scrutinized every second, of that final day on my feet. I have beat myself up, and find it hard to be forgiving, to myself, for my foolish actions. I have wondered, "What if..." to a million different scenarios, and have searched in vain for reasons, or self explanations, for why I chose to do, what I did. The lists go on, and on: we should've never gone to that party, I should've never drank, I should've had more to eat, I should've waited to go swimming, I should've used the ladder, I should've never dove. Each action, seems more stupid, worse and irresponsible than the one before it. The truth is, there are no reasons, or good explanations, and even if there were, it wouldn't change the outcome.

Although I never intended to do harm to myself, or anyone, my actions that day, have caused me, and my loved ones a tremendous amount of pain and grief. The combination of many common mistakes, resulted in a gigantic disaster. One moment I was happily, enjoying a self sufficient adult life, the next I was crippled beyond saving. I went from having everything I wanted, to my worst nightmare, overnight. While my life has been the most permanently effected, my accident has had a rippling effect, on everyone that was closest to me, at the time of the accident.

My accident created a horrible strain on my relationships, with many of the people I love. The sheer magnitude of loss, the fear of the uncertain, and the reality of the irreversible nature of my injury, effected everyone I love. The Christina I was, died the day of my accident, and it's been a very bumpy rode, living a completely new reality, being a completely new person. My accident has changed the way I can interact with the people I love, and has forced limitations on what I can do, and how much of a role I can play, in the lives of my family and friends. I've had to come to terms with my new life, and they've had to come to terms with the new me.

My family and friends have at times been my biggest obstacle, while at other times my biggest supporters. I have had many fights, falling outs, and disagreements, with the people closest to me. Thankfully, most of my relationships have stood the test of time, and have whethered this storm, called paralysis. Most of my loved ones have stayed right along side me, through laughs and tears, through thick and through thin. Although they might not all get along with one another, or see eye to eye, they have put aside their differences and rallied behind me. I am so grateful for my family and friends. I feel so blessed, to have so many people that love, and support me.

The rode has been especially difficult, these last couple of years, and I know for sure, I'd be long dead, if it were not for the many loving hands and hearts, that prop me up, and give me strength. There are a few people, that I have lost through this all, and for them, all I can say is sorry. I wish I knew a way to fix my mistakes, or how to repay them. It makes me sad, to think I am missing out, on being a part of their lives, and vice versa. All I can do, is try my best, with whatever time I have left.

2,190 days ago, I thought by now I'd be married to Jimmy, we'd have a couple of kids and I'd be a veteran teacher. I never thought for a moment, that life could throw me a curve ball, or that life would not fall into place, like I had planned. I thought I'd be healthy, and able to care for myself, until I was old and grey. The future seemed brighter than ever, and full of a million possibilities. I was the happiest I had ever been.

2,191 days ago, my entire life was crumbling in front of me, and my future was terrifyingly uncertain. I was newly paralyzed. I was vulnerable and scared. I was in and out of consciousness, and on the verge of death. I knew I might lose everything. I was in tremendous pain, and utter shock. I couldn't imagine a worse situation, a worse moment. I prayed with all my being, that somehow things would be ok. My loved ones were fighting, blaming, and fracturing. I didn't know who to turn to, or what to do.

Today, was not how ever imagined it to be; not during my best, or worst days. I spent the day with Jimmy, my exboyfriend. It was bittersweet, and strangely ironic, spending today with him. It was a mix of extreme high, and extreme low emotions, for both of us, as we remembered a day that changed both our lives, forever. Although we are no longer together, we will always love each other, and share a special bond. He is still one of my closest, dearest friends, with whom I feel I can be most open. He is the one that saved my life, that night, and pulled me from the water. Even though we split (romantically) months after my accident, we have been perpetually drawn back to one another, over these past six years. My accident has changed us both in profound ways, but despite everything, we share a bond, unlike any other.

Six years ago, I had bought him a birthday cake, that we had planned to share together, that coming Monday (6/6/2005), in celebration of his twenty third birthday. Those plans, like so many others, were ruined, and never came to fruition, because of my accident. I have always felt like my accident stained his birthday, with such a horrible memory. I have always wished things could've turned out differently for us, and that we would be able to share a happy memory, for his birthday. Today that wish came true.

Although today was not the ideal day, of how I wished to be spending Jimmy's birthday, I was thankful nonetheless. I feel blessed to have him back in my life, even if it's just as friends. Of course, I'll always wish for more; for both of us. However, I've come to accept my reality, for what it is, and know no amount of wishing can make it be, what I want it to be. I tried my best to enjoy our time together, despite my longings, and limitations. I tried to savor what I could, and be glad to have sitting beside me.

I don't know what the future holds for me, for Jimmy, or "us" for that matter. I gave up trying to predict the future a long time ago. All I know is that, despite my cold sweats, and relentless chills, I was able to have a few laughs, and enjoy seeing his smile. It felt good, taking a bite into a piece of his birthday cake, and for as much as it stung, to not be able to do everything I wished we could be doing, I am so glad we spent today together. Today was a day of closure, and an opportunity to create a positive memory. I hope we can make a few more happy memories together, before this life is over.

- Posted using BlogPress from my iPad