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



- Posted using BlogPress from my iPad

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 :)

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. 

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.


- Posted using BlogPress from my iPad

Shitty Day

Today has been a very shitty day, in every sense of the word. I hate to resort to vulgarities, but I feel as though it is the only word that can appropriately express the level of exhaustion and anger that I currently feel. I've been struggling more than ever to keep my sanity, and keep pushing forward, and today is a classic example, of the overwhelming tragedy and frustration that paralysis has thrust into my life. Despite my best efforts, I'm forever left feeling like a prisoner within my own flesh, and wanting anything to escape. I feel the need to share today's events, so far, to highlight the ugliness of paralysis, and shine a light on many reasons why living with paralysis has been, and continues to be so challenging for me. I'd challenge anyone to live through a few days like today, and still be able to be joyful and find motivation for wanting to keep living, paralyzed.

Today started like many mornings have, since my accident; sleepless and in pain. I spent the better part of last night uncomfortable, with cold sweats, chills, and mystery chest pressure, keeping me awake. I lie in bed trying to find comfort in the only position that doesn't hurt my shoulders (on my back- which is never how I used to sleep), and toss and turn my head, from left, to right, and back again. All the while, my mind is racing at top speed- apparently, the only speed I have- and I'm trying my best to ignore my discomfort. It's amazing how uncomfortable I can be, despite that fact that I can't actually feel most of my body. The little I can feel is full of annoyances, and the littlest of movements can trigger a leg spasm, move my hair out of place, create an itch I can't scratch, tense up my arm, or any number of stupid little things, that I can try to ignore, or call someone for help. I end up ignoring about half of my impulses, out of decency and consideration for my family/aides. Either way, most every night is a restless night, full of inner turmoil and despair. I can't help but beat myself up, over my accident and cling to the life I had. All of my memories bring with them a certain amount of grief, and I have yet to find a way to let go of what I lost (in both potential for the future and in reality). I spend most my nights trying to distract myself from negative thoughts, and find enough peace to fall asleep. Unfortunately, even sleep is not an escape, as many nights are filled with bad dreams, that make waking up seem somewhat better. I pray and pray, and ask God for a cure, to take me, and spare me the suffering, or at the very least, give me some measure of understanding, as to why my life has to be so difficult. In that respect, last night was the same as every other night since my accident; no answers and little sleep. Once I finally did manage to fall asleep, it was nearly 9am and my nurse was already on her way.

My nurse arrived around nine thirty, and so began my bowel program, most certainly my most hated aspect of life with paralysis. Bleary eyed, sick to my stomach, and depressed to be starting off my day in such a horribly violating way, I say nothing as my mom and nurse begin to strip off my adult diaper (wonderfully sexy garment) and roll me on to the sling. Next, it's time to get pumped up into the hoyer lift, and take the adrenaline filled ride, across the room to my most hated piece of furniture, my commode. It's impossible to explain to fear and mix of sensations that go through my mind, as my body is suspended in mid air, with no means of stopping myself from falling, or way to brace myself for impact. The hoyer lift makes me feel like I'm floating through the air (not in a good way), and unless you are paralyzed, it's hard to imagine how terrifying a small "ride" can seem. It is one small aspect of life that I've learned to tolerate, and although it makes me on edge, once I'm safely strapped into my commode, or landed in my wheelchair, it's not a big deal, and something that makes caring for me easier on my family/aides. As scary as it can be sometimes, it beats getting picked up and carried, which is usually more painful, and more dangerous, for everyone involved. Once I got strapped into the commode, the nurse wheeled me into the bathroom to begin the bowel regime. It's an awful necessity, that has never gotten any easier to deal with.

The only comparison I can think of, to accurately describe my feelings toward bowel program is rape. Although I realize that is a very strong word, with very negative connotations, hear me out. Before my accident, I was a very self conscious person (still am) and had many issues regarding the bathroom (still do). I was very private and couldn't stand the thought of using public restrooms, outside of my home, and a very few select friends' home to EVER "go number two." I can count on one hand the number of times that in almost TWENTY FIVE YEARS of my life on my feet that my IBS forced me into the shame and embarrassment of violating my own code of bathroom conduct. I find everything about poop, and feces related actions (aka-passing gas) humiliating, unladylike, and disgusting. If I had a choice, I'd negate the whole process all together, and have said many times, to many doctors, that I'd gladly trade in food, for a liquid diet, if it meant I could not have to "go" again. Obviously, that is not and option; I must eat and therefore poo. Having a spinal cord injury has made my worst fears a reality. It is truly Hell on Earth. Not only am I forced into revealing ever flaw, and every inch of my naked body, I'm forced into being violated on a near daily basis. Incontinence, and the anxiety over accidents, practically rule my life. I feel shame and embarrassment having to have other adult human beings not only acutely aware of my bodily functions, but up close and personal, in my face, and in my space, whether I want them there or not. I'm forced into accepting another human being, put their finger up my rear end, multiple times, every other morning, to stimulate my body into doing a process, it should be able to do naturally, and on my own. Personal space and privacy are luxuries that do not exist in my life. This morning, like so many other mornings, I had to make a "choice" to accept help, and accept having a bowel regime, despite my embarrassment, loathing, and revulsion to the process, because my only other alternatives are to become impacted, septic, and die, or have a colostomy bag strapped to my side (a bag full of the single most hated and embarrassing thing possible, in my mind). Do you really consider that a choice? I'm forced into accepting the bizarre, unnatural and repulsive, because the only choice, is to become sicker and/or possibly die. My paralysis shoves bowel program down my throat, and silences my voice, because there is no viable alternative. My body no longer answers to me, therefore I'm forced into answering to other people. Right now there is no cure. There's life; paralyzed. Take it, or leave it. That is my only real choice.

My list for reasons to want to die vastly outweighs my reasons for staying. The thing that keeps me here is fear. I don't have a strong faith in God (like many people have). Instead, I have a mountain of fear and doubt. I was raised Catholic, and although I don't believe in much of the religion, I do hope that there is a God. Catholicism is not a very flexible, open-minded religion, in my experience. I attended Catholic school for the first ten years of my schooling, and although I don't buy into most of the rituals and the emphasis the Catholic church puts on going to church and the Pope, the lessons I learned as a child, still have a hold on me. I wish that I had a strong faith in God, any God, because I have seen what peace of mind and strength that faith has given to other people. One of the reasons that turned me off to my childhood belief in God, was the rigidness of the religion I grew up. I consider myself to be a very open minded, liberal person, and those aspects of my personality make it extremely hard for me to believe in the triumphalist type belief system of most organized religions. I've read a lot about (and watched documentaries) about various religions. I enjoy history. I enjoy philosophy and the history of how religions were formed, and came to be. I've read a lot of the Old & New Testament of the Bible throughout my life. It seems absurd to me that God, an omniscient, omnipotent being, that has the capacity to create our entire universe, would be hung over petty rituals and/or the name by which we call him/her/it/them. I can't believe that if there is a God, that he/she/it/them would punish damn someone to an eternity of suffering, despite that person being kind, and good, because that person wasn't born into the right culture, time, or place, or didn't worship him/her/it/them by the right name. I can't stand that people are willing to hurt other people in God's name. It's horribly asinine to think that such a powerful, all knowing being, would want their/his/hers/its creation to waste its energy and time on hurting one another. If most people would be open minded enough to learn about other religions and consider each other, as equal, human beings, it would be obvious, that there are basic messages that transcend all faiths; to love one another.

Before my accident I probably would've classified myself as an Atheist. Now I guess I'm Agnostic. I'm not really sold on any particular God(s) or religion, but I do want to believe in something. Catholicism is very clearly opposed to suicide. Catholicism very clearly states that the only path to heaven is Jesus. I have a VERY hard time accepting both of those "truths." I have a lot of friends of varying faiths, that are good people, that contribute to society in positive ways and are kind to their fellow man. I can't bring myself to worship a God that would condemn my loved ones and friends to a firey abyss, just because they don't call him Jesus. If there is an afterlife I have to believe it's open to all good human beings and that if there is any judgment, that it's fair and just. I'll never be sold on the thought that God would care about insignificant things like clothes or what type of food we eat. My Catholic upbringing causes me to have a lot of fear and anxiety over what will happen to my soul, if I have one. I want to believe that God is not as rigid, jealous and inflexible, as Christianity, Judaism or Islam would have us believe. People say God only gives us what we can handle, but I feel like my life is proof that that isn't true. I can't handle the curve ball that life (or God) has given me. There are so many paradoxes, that keep me always doubting and questioning. I mean, if God loves me, how can he/she/it/them let me suffer? If God has a plan for us, then how can we also have freewill? I'm a logical, realistic person, that makes it very hard for me to believe. I know having faith means blindly believing, but it's not something I can force. On the other hand, the teachings that I was brought up with, very clearly state that I will go to Hell if I give up on life. The thing is, I feel like my situation is not average and I don't know whether God would consider not accepting help, as suicide. I'm not an able bodied person, putting a gun to my head, because my marriage failed, or I lost money in the stock market. My life is sustained by very unconventional means. I'm not healthy. I'm suffering.

It is my doubt and confusion over my faith in God and refusing help that keeps me here. Although I do feel sorry for family, in that I know they would be sad if I died, I feel as though I have already given them 5 1/2 years extra time with me, and I feel that my suffering has been sufficient enough to feel satisfied that I've tried my best, and given them my best effort. I think it would be selfish of them, and cruel to expect any more from me, and hope that despite their grief, that they would understand my death would alleviate my suffering. Besides, if there truly is an afterlife they can draw strength from knowing we'll be reunited. What stops me from giving into my wish to die, is my uncertainty over what will happen to my soul. It's horrible having anxiety over a soul I'm not even convinced I have. All I have is doubt. I'd like to believe that if God does exist, he/she/it/they knows my heart better than anyone, and knows how much I've suffered and how sorry I feel for wanting to give up. I'm don't think refusing help is the same as a healthy person committing suicide. Like I've said in a previous response, if I technically "left my life in God's hands" I'd be dead. I can't care for myself. I'm only here because the resources exist to keep me here. The problem is, I'm not happy. I don't consider this a quality life. I know I have talents. I'm aware I'm gifted in writing and art. The problem is, it's not enough. While I might have the ability to still do certain things, they're not enough to fulfill me. It makes me frustrated, confused and angry that everyone (including God-evidently) would be fine and respect the fact that I don't want to live dependent on machines. I can refuse a vent and get into heaven, but I if I refuse my bowel program, I'm committing suicide and will be damned to hell. Quality of life means more to me than quantity. Most people don't want to admit, or can't understand how awful my life is. No one would want my life for themselves. It seems very harsh to me that I'm forced to endure so much pain and that God would punish me, for not wanting to suffer. It takes A LOT to keep me alive; living a life I hate. The rules of suicide and what God would or wouldn't consider suicide, seem very unfair, confusing and ambiguous. It's fear and doubt that keep me here.

It's fear that keeps me pushing forward, on days like today, when I'm worn down and feeling like I'm forced into accepting horrible conditions. This morning during bowel program, I felt horrible. I was clammy, with cold sweat, and shivering with cold (phantom feelings of cold, in limbs I can no longer feel, on the outside). I wanted to disappear and run away, but I couldn't. Bowel program is the only option available (that I'm even unwillingly up to considering), to give me any sort of regularity and combat against incontinence. It is not natural. There is no privacy. Embarrassment doesn't matter. This morning I had the added discomfort of nausea, which is the only thing equally horrible to bowel program. There I sat, half nude, strapped to a chair, over a toilet, bent with nausea, no means to stop it, or way to clean up, no where to hide, no relief, and all the while I'm enduring my nurse forcing my body to expel what I no longer can. In that moment of nausea I wanted to die. I prayed to God to take me. I couldn't imagine my life any worse. Doubled over with nausea, and choking back tears, I felt I needed to get back into bed, and hoped that lying down would offer some relief. While having bowel program in bed disgusts me way more than doing it over a toilet, it's something I was forced to accept, every night, for the first year and a half, after my injury. Although I hated the thought of having to do it, anything that might take the nausea away, in that moment, was worth doing. I asked my nurse to call my mom in for help, and they rolled me back into the room, and hastily began getting me ready for the hoyer ride back to bed. Just as they started to lift me up, and I felt as though I would vomit, my body decides to defecate, all over my bedroom floor. My mom, and nurse, highly aware of how much this would upset me, rushed around and try to contain the mess, while at the same time get me safely back into my bed. By this point, I'm numb. This is the point where the mind starts to short circuit, because it just can't handle any more trauma. As the nausea subsided, I landed in my bed, and my nurse began to tend to me, while I watched my mother scrub my beige carpet, for the next hour, filled with shoulder pain. What could I do but just lay there and accept it? It's mornings like today that make me want to scream in rage, in the unjustness of it, and makes finding a silver lining to life, near impossible. Who would want this type of life for themselves? The only motivating force in my life to keep going, is often the fact that I feel like I have no other choice. I have to take it, or leave it for what it is, no matter how unhappy I am, or how much I hate the "choices."

It's days like today that make me question God's existence and what he/she/it/they think about my life, and make me question why I should have to continue living. It seems so cruel to me, that society and my religion (the belief system that I was raised with) expect me to endure living with paralysis. I feel like a loving God would understand my suffering and understand my need to escape. Surely, my Earthly parents love me as much as God does, and yet I know if they had it within their power, they'd have healed me right away. I can't even ask them to help me end my suffering, because society rather keep me living, no matter the price I have to pay. It infuriates me that our society (based solely on our laws) values the "life" of 3-5 day old cells (blastocysts) enough to not want to use them for research that could potentially alleviate my suffering, and that of millions of LIVING people, just like me. Our laws dictate that they rather see those cells be thrown away, rather than help me. That's how little my suffering matters, how easy it is to look away. We treat our pets with more respect, compassion and dignity, than we do people like me (people with extreme disability and chronic, incurable illness). I don't get the option to die peacefully. I have to suffer. I feel as though it is irrational and hypocritical to ask me, to expect me to, to demand I live this way. How can we put such a high value on something that has no chance at ever living (outside a womb), and turn a deaf ear to people that live and suffer, every day? How is it that we are compassionate enough to not want to see an animal suffer (when we know there is no cure and prolonged suffering is inevitable), but not enough to allow me to die in peace, with dignity and respect? Instead, I'm asked to live an impossibly difficult life, that no one would ever choose for themselves. Why can't I have the same rights that my dog and cat have? I can't help but feel outraged, and desperately sad, at how trapped I am. I feel like I'm stuck with choices I don't want to choose, and no way out. So here I sit, forced to somehow keep moving forward, while keeping my sanity. It's a predicament I wouldn't wish on my worst of enemies.

Taking Advice, Getting Feedback and Reasons For Sharing

I've gotten quite a lot of feedback, from my last two blogs, which I originally posted in the CareCure (online community related to spinal cord injuries)forums. Besides the wonderfully kind words of encouragement, and empathy, two of the key issues that were brought up were, possible alternatives to some of my most difficult obstacles and suggestions based on personal experience. I really appreciate all the ideas, feedback, life stories and concrete answers that people took the time to write. A few of the issues that I would like to highlight, and expand on reasoning, are the issuses of personal hygiene and my reasons for being so open about my life; even embarrassing and/or painful aspects of life, that most people find hard to discuss.

The number one, hardest aspect of living with paralysis for me is all of the highly intimate hygiene issues that I need help with. One of my biggest stressors is my bowel program (as itis for many people in my situation) and the only real alternative, would be to have a colostomy. This has been suggested to me, both recently and in the past. The thought of a colostomy bag is (to me) 1,000 times worst than BP. Just the thought of it depresses me. No offense, but it's definitely not for me Ideally, not having to go number two in the first place would be my solution. Unfortunately, that's not possible. The whole bodily fluid thing really disturbs me & grosses me out. I'd literally give up eating, if it meant I only had to deal with urine. As much as I love food, I gladly trade in a liquid diet, if it meant I could avoid needing to ever have a bowel movement. That's how much I hate the whole process, in general. I know it's a natural bodily function, that everyone does. I've just always been uptight about it. I guess you could say I'm somewhat "poopaphobic." I don't want to have to do it, or be around it, so the thought of having a bag of it strapped to me, is probably the worst case scenario I can think of. I've always been very private about bathroom & hygiene stuff, so being paralyzed is horrible. I find it disgusting and unladylike. I normaly would've never wanted to discuss it (and find it challenging to be so revealing), but feel it needs to be said, because the average has no clue, and would otherwise (and often does) take this fact for granted. I'm forced into having help with bathroom needs and it's never gotten any easier.

Sometimes I think being a woman, makes it even harder to accept & not be embarrassed. I don't know, but all my guy friends (able bodied & non) are way more easy going & less bothered by stuff like that. I mean let's put it this way, I dated someone for almost six years (also lived together for a portion of that time) and I never once passed gas in front of him. In the 24yrs I was on my feet I never once went number two in a public restroom. So you can imagine, having BP & a catheter is pretty much like hell on earth for me. Not to mention, as a woman, I have to also accept help every month with my period & other various feminine hygiene issues, that men just don't have. All in all, the adjustment to needing help with all personal care ADLs has been difficult.

Just the fact that so many people have to see me naked bothers me. I've always been self conscious and have had body imagine issues. My paralysis has not only made my body even more flawed, and less appealing, it also forces me into showing those flaws to numerous people (on a daily basis), over & over again. Its mortifying having to have someone else do stuff like brush my teeth, shave my under arms, clean my ears, help me blow my nose, acne, etc. I used to go to great lengths (as do most woman- doing my hair, make up, creams, shaving, plucking eye brows, getting manicures, exercise & diet) to look nice and to feel good about myself and feel as though I was pretty. It's not only embarrassing needing help with all personal hygiene needs, it also undermines my dignity and self worth. I'm forced into revealing every flaw and forced into having to ask for help, to look nice and correct imperfections, that under normal circumstances would be totally secret/private. It's all very challenging.

Like I've stated over, and over again, I'm just looking into all of my options. Living with paralysis has not been easy for me, and I'm tired of chronic sickness. This is not my first bout of serious depression, nor is it necessarily my last. Living with paralysis is a daily struggle. Choosing to fight to live the life that I have, is one of the few things that is still within my control. I will continue to do so for as long as I possibly can. I'm just the type of person that likes to think ahead, and take comfort in knowing that I'm in control of whatever aspects of my life that I CAN control. Paralysis has robbed me of almost all of my independence, so I'm forever seeking new ways to take back whatever control I can. My mind is one on the few assets I still have, and although it can at times be a curse (haunting memories and crippling grief) it has allowed me to be able to manage my own affairs and make decisions about my care, and overall quality of life. My mind continues to be the greatest source of pain, and although I realize that my perspective, way of thinking, and acceptance can change over time, I'm the only one that can make those changes. I struggle daily with the inner turmoil, of dealing with the life and choices paralysis gives me, and my sadness and desperate longing to have the type of life I once had. I realize it's a battle that only I can fight.

Last week I was chatting with an online buddy named Mariam about being so depressed lately. She's also a member of the AMFPA. We share a lot in common, in fact she's one of the few people on the planet that I feel like can truly understand where I'm coming from. We're around the same age, both artists and both suffer from similar spinal cord injuries. She's been injured for almost fifteen years now, and is one of those rare gems, in that she's somehow been able to keep it together, keep moving forward and find joy, despite being paralyzed. I had reached out to her, sending her a link to the CC thread, to get her point of view.

We had a long chat over Skype, and I really enjoyed our conversation. It always feels good to vent, but I particularly felt relieved talking with her, because I feel as though she really understands where I'm coming from, and has experienced much of the same struggles that I'm going through. She's amazingly positive and is seemingly much more open minded and receptive to going with the flow, and accepting her life with paralysis, much better than me. She'd probably agree with me, in saying that her current state of acceptance, and/or her strength and perseverance, as well as her current frame of mind, all took time, and that it might not make sense for me to beat myself up, for not being as strong as she is. She readily admitted to me, that living paralysis has also been a struggle for her, and that she also experienced a period of about two to three years (around her five year anniversary), where she was extremely depressed and in a similar dark state, that I'm currently experiencing. She was obviously, able to overcome it, and although she has her bad days, seems more well adjusted and happy with her life, living with paralysis, than I can ever imagine for myself, at this point.

During our discussion, I was expressing my wish for being understood, and how little I feel the average person really knows, what it's like to be paralyzed. I said I especially wished my loved ones understood how much I'm suffering, and how hard it is for me to live this way. Mariam then asked me, "What if they did understand? What difference would that make?" It was the first time anyone had ever asked me that, but I immediately knew the answer. I had to hold back tears to answer her, but managed to respond with a shaky voice, and tell her the answer that's been tugging at my heart and mind for a long time now. It's a two fold answer, that has been my driving force.

Firstly, I feel as though if people really understood what it's like to live a day in my shoes, they'd absolutely want to find a cure. I know in my heart, with 100% certainty, that anyone who could experience the grief, loss, fear, and sense of powerlessness that paralysis causes, that they'd want to fight with every ounce of energy they had to want to cure it. I feel as though, funding for research and emphasis on finding a cure to paralysis would take precedence and support would sky rocket, if more people really knew what it felt like to be paralyzed and to really comprehend how ethereal life is, and that their lives can change, as quickly as mine did, at any given moment. It is for this first reason that I pour my soul out to strangers and open my life up to the general public. As hard and as embarrassing as it can be at time, my goal is education. I want people to wake up, and understand what being paralyzed means.

Secondly, I feel as though if my loved ones truly understood my pain, and could experience all that I've been through, and all that I'm feeling, that they'd be able to let me go. This second part to the answer is what I told Mariam, and is what most often crosses my mind. I feel as though anyone that truly knew my pain, would be able to understand why I long to be free (by death, or by cure) and be at peace to let me go. I often think people expect me to keep marching forward, because they don't (and can't) know what they're really asking of me, and what a struggle it is every day. Although my loved ones might see my death as something horrible, and sad, I'm at a point where I'm tired of the daily battle and would welcome it. I just want to be free again. It doesn't mean I don't love my family and friends, and wouldn't miss them. They just don't understand how hard living can be. It's my hope that by sharing my thoughts and feelings I can help everyone (anyone who is willing to listen) to understand paralysis better and to motivate others to fight for a cure. Even if I never see a cure, I would feel at peace knowing I helped to prevent other people from ever having to experience all that I've been through, if I can inspire others to support finding a cure. Although I have little hope for a cure for myself, I do still wholeheartedly believe that a cure will be found some day. Again, I don't wish to upset anyone. I'm just being honest and sharing my thoughts, and where I'm at, right now in my struggle with paralysis.



Check out my buddy Mariam's website- I love her work!
www.mariampare.com


- Posted using BlogPress from my iPad

It's Hard Feeling Happy, When You're Feeling Sick.

As I mentioned in my last blog, I've been doing a lot of soul searching and actively seeking out answers to some tough questions. My state of mind is an ever changing battleground, where I find myself forever fighting to find reasons for why I'm suffering, and looking for motivation and purpose to keep moving forward. One of the biggest obstacles that makes living with paralysis such a struggle for me, is chronic illness and feeling physically sick. The near constant discomfort has left me feeling very worn down and has pushed me to examine my life very closely, and ask myself why I try so hard, despite my unhappiness, and if there are any solutions out there, and what all of my options are, regarding my life, as it is.

I recently discussed some of these questions with my doctor. He was kind of vague in his responses. He's a PA with a visiting physicians group. He sees me at home about once a month. Most of his patients are elderly. It gets frustrating at times (even when I go to the hospital) because most doctors (including mine) aren't specialized in dealing with spinal cord injuries. I feel like most of the time we're just playing a guessing game, trying to pin point why I'm feeling sick. Most of the time, I get told it's a UTI or possibly neurological. In other words, they don't really know for sure. Understandably, it's probably just as frustrating for them, because I can only tell them secondary symptoms (since I can't actually feel what's going on) like fever, chills, chest pressure, sweating, etc. Given the fact that I have a catheter, my urine specimens always come back positive for infection, so half the time I wonder if it's a UTI that's making me feel sick or something else. All we ever do is run tests, but never find anything concrete. Honestly, I don't know that a specialist could do much better. I'd just feel more confident if I had more access to doctors that had more experience dealing w/SCIs. The only place we really have in NJ for outpatient care is Kessler Rehab, which is an hour commute. It's just not worth going there, every time I feel sick.

Aside from the emotional trauma and dealing with an insane amount of loss, living with paralysis has been physically taxing as well. One of the biggest problems for me personally, is my ever diminishing tolerance for sitting in my chair. My ability to sit in my chair, be productive, go places (not that I'm often itching to go out) and do things, has gradually become more and more uncomfortable over the past couple of years. The discomfort and the chronic sickness has made it very hard for me to find joy in the things I used to. Ever since I had a bed sore (6cm wide and deep- at its worst- on my upper thigh, below my backside) back in '08 my tolerance for sitting just isn't the same. The first couple of years post accident I could comfortably be up in my chair for 8hrs a day, 7 days a week. Now, I get out of bed on bowel program days (which ends up being like 3 hours on a commode chair-for BP & my shower) and then spend the rest of the day in bed; sitting up in bed for an additional hour or so around dinner time. I try to get into my power chair on non BP days, but lately it all depends how I'm feeling. The thing is, I end up getting very uncomfortable in my chair after only sitting for a few hours. My symptoms vary, but it usually starts off with a clammy sensation, followed by weird tingling throughout my body, then further followed by a gradual pressure building up in my chest and/or abdomen. On top of that, I'm constantly dealing with leg spasms, phantom pain and tingling in my legs and feet. I end up asking my aides or family to check if my catheter is kinked, if my clothes are wrinkled, if Id had an episode of incontinence, or any other visible problem, and we almost always come up short.

I do periodically weight shift while I'm in my chair, and have only ever had two bedsores (one was on my elbow). Most of the time there's just no real rhyme or reason for why I start feeling symptomatic. The chest pressure gets really bad though. It feels like someone is filling me up with air and squeezing my sides all at the same time. I also start to get lethargic and feverish after about four hours of sitting. I've had various tests done to rule out serious heart or lung issues: blood works up, X-ray, CAT scan, sonogram & EKG. All of them came back fine. I take Prilosec OTC and have ruled out indigestion for the most part, because there's no obvious connection to meal times. I had a OBGYN exam to rule out anything on that end, nothing. Although, I have noticed a change in my cycle this last year, in the sense that around that week I feel worse than usual. During that week I'm usually achier, more tired and have more frequent fevers. All in all, it's been a vicious cycle, that has kept be bed bound most of the time. For whatever reason, the symptoms do subside a bit more when I'm lying down (not completely though). Knowing I'm going to feel uncomfortable makes me not want to bother getting up, which in turn lessens my tolerance for sitting up. It's a lose-lose situation. I'm just so tired of feeling nauseous, feverish, achy, and down right icky, 75% of the time. It's kind of like having the flu five days a week. It makes it very hard to be happy, or motivated, when you have the chills and feel discomfort.

I'm at my wits end. On one hand, I want to get up and be more productive. I end up feeling guilty and worthless for being in bed all the time. On the other hand, I legitimately feel sick, and lack the drive to do stuff and risk feeling worse. On BP days for example, I'm wiped by the time the nurse is gone, I'm showered and have eaten breakfast. Just sitting on the commode for three hours is taxing on my body, not to mention the constant stimulation the nurses have to do, to make me go to the bathroom. The whole process is both mentally and physically traumatic for me. It has also created hemorrhoids (how wonderful) that are directly irritated further by the entire process. I never had them before my accident, but I hear they are extremely painful. Although I can't feel the pain directly, it could be one of the contributing factors to my mystery symptoms and discomfort.

I end up chalking up a lot of my discomfort to autonomic dysreflexia, which is something many people with paralysis have to deal with. AD is the body's way of compensating for the fact that Ican't feel It is like nature's way of giving me a warning system. When there's something wrong, like my catheter being pulled, or an ingrown toenail, my body responds by elevating my blood pressure. The alleviation in blood pressure presents itself in different ways: chills, profuse sweating, muscle spams and throbbing headaches. If I start to feel symptomatic, I usually assume it's AD related and try to find the cause. If we do find a reason and fix the problem (such as repositioning me, or flushing the catheter) the symptoms subside almost immediately. Unfortunately, most of the time we don't find an obvious reason. So although I know my depression is a contributing factor to me being unmotivated and dissatisfied with my life, my reasons are not all in my head. My physical condition (aka-paralyzed) is the number one contributing factor to my depression, and my overall health and comfort has made it even harder to remain upbeat. Able bodied or not, no one likes being sick.

Having no real diagnosis or treatment for the chronic pressure, fevers (always low grade and always in the evening) and cold sweats makes me very frustrated and adds to my sense of hopelessness. As it is, I take over a dozen pills every day, and have the BP & catheter to contend with, all of which I absolutely hate. All of which, is unfortunately necessary to keep me alive, and relatively comfortable and healthy. The only problem is, it's obviously not working- at least not well enough. It's especially aggravating that I seem to be forever adding more pills and seeing few results. I take three different medication to help with depression, anxiety and insomnia (Pristiq, Remeron & Xanax). I take four different medications for my bowel & bladder related issues (Senekot, Colace, Detrol & Ditripan), on top of watching my diet. I watch my calorie intake and make sure to eat lots of fruits and/or veggies. Then there's the Prilosec, which is supposed to help with stomach issues and a multi-vitamin. It's bad enough being paralyzed, but feeling gross on top of that, just makes me want to curl up and sleep forever. It's like having a chronic illness, on top of a chronic condition. There's no cure in sight for my paralysis, and there's seemingly nothing to make me feel better. I wonder how many people with spinal cord injuries deal with similar problems. It's hard feeling like no one understands you and even harder feeling like there are no answers. I'm just stuck dealing with it; just like all the emotional pain.

Like I said, I've been feeling very down and tired of struggling so hard to cope with my situation, only to feel empty and sad. It's hard fighting for a life you hate living. That's why I started to seriously consider what it would mean to stop fighting. I mean, in terms of the physical and medical repercussions. It's not to say that I have already decided to stop trying. I'm literally just searching for answers. During these last five and a half years, few people have had any concrete answers to give me. There's no recipe for how to cope with having your life turned upside down over night, or how to deal with finding yourself complete stripped of yur independence. Everyone's situation and injury is different. The emotional scars and finding reasons to move forward have to be dealt with on your own terms. No one can say or do anything to make the emotional aspect of dealing with paralysis easier.

It's just infuriatingly frustrating when there's not any answers for the physical stuff. I get so angry sometimes. It seems so unfair that medical science has no cure; that they patched me up and sentenced me to live the life I have. It seems absurd and cruel to me at times, that my loved ones, doctors and nurses expect me to be happy, being paralyzed. It is not a high quality of life, no matter how you slice it; not to me. I feel I have the right to know all the options available to me, because at the end of the day, I'm the one living my life. I'm the one suffering, both physically and mentally. I'm the one that has to endure bowel programs, chronic aches, lack of privacy, cope with all of my memories and all of the loss. I never get a break from it. I never have the luxury of not thinking about it. I'm stuck, in every sense of the word.

I want to know what to expect if I were to say, enough is enough. What would happen if I stop having a bowel regime? What would that do, to a person in my condition? My doctor didn't really have an answer to that question. So I'm left wondering, who would have the answers? I'm not even sure who to ask, for some of my questions. That's why I've opened the subject up to general discussion. I figure there might be people out there who went through something similar with loved ones, or doctors, or nurses that have experience, working with people with paralysis and palliative care. My doctor thought I would qualify for hospice, if I decided to refuse nutrition, hydration and my treatments. He didn't know for sure. I'm wondering who would know. It's not as if I'm taking this matter lightly, and just saying I'm too sad, so I'm going to stop eating. I'm just curious to know exactly what my rights are and what to expect, from a medical perspective, if I chose not to sustain my life; if I decided to refuse help. In a way, I feel like everyone is tip-toeing around the answers, even if they know them, out of fear. It's as if people think the moment I have a few answers I'm going to die that very day. That's not the case. Surely, the thought of starving myself to death does not sound pleasant, and I'm in no rush to find out what it's like. I have looked into it though, as it is one of my only means of escape.

I've read up on the right to refuse nutrition and hydration. There is information based on eye witness accounts. For example, I read it's best not to intake any water at all, because it only prolongs the suffering. I read instead, you should just use a sponge to moisten the lips, to help alleviate the dryness, due to thirst and dehydration. I want answers, because if I really felt as though I absolutely had no will left to fight, I'd want to make my last days the most comfortable as possible. Refusing bowel program and what ever else, I'd decide to stop, would be careful decisions that I want to make based thinking things through and only ever as an absolute last resort.

I realize this might all seem morbid, and/or suicidal to the average healthy individual. The truth of the matter is, I have very little control over anything in my life and I've been hell and back. I know exactly what it's like to be on the brink of death. I've experienced being dependent on machines for life support. My life span is not that of the average person. I am not healthy. I know what it's like to feel like a burden and to have put family in the position to have to make life and death decisions for me. Therefore, I feel as though I both have to and want consider ALL of my options. I've already had to put my wishes down in writing, in my advanced directive, in case I'm unable to communicate my wants. I'm just at a place right now, where I want to know all my options, even if I decide to exercise while I still can communicate them. I mean, my living well basically already states everything I'm asking. I'm just wondering what I'd go through, and/or experience physically, based on medical experience and advice.


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Sick of Being Sick

I've been fighting cold sweats, fever and overall discomfort for a couple of weeks now. I finally decided to bite the bullet and take an antibiotic. I try to avoid them, as they almost always reek havoc with my stomach. On top of that, I'm waking up every couple of hours from the time I try to fall asleep, to the time I have to wake up. I haven't even been able to take a nap lately. I'm no stranger to insomnia, it's just that I'm more accustom to having racing thoughts keep me awake, which I try my best to turn off. Recently though it's more discomfort waking me up than anything else. It's especially annoying not being able to toss, turn or reposition myself. As it is, I've had to adjust to sleeping on my back, something I never did before my accident. I can honestly say, I haven't slept longer than four hours straight since I was on my feet and eventually, it always catches up with me.

Living in hospitals, rehab and the nursing home was the worst, because it was frightening being paralyzed and on my own (no family or friends with me) at night. Not to mention, perpetually noisy. I had zero control over the schedule or the waves of medical staff that constantly came and went. Living in my own apartment has helped to decrease my nighttime stress and there's certainly less noise. All in all, I still wake up tired most mornings. Part of the problem is the fact that I can't move, like the average person. Although I don't always feel uncomfortable, my body reacts to being in one position for too long and causes my legs to spasm, or I get sweaty or I get a weird tingly sensation, which eventually wakes me up. Either that, or I get too cold, or too hot, or my hair bothers me. Naturally, I need help to get repositioned. Sometimes it takes a few minutes for someone to hear me (especially if they're sleeping) and I end up being wide awake by the time the person leaves my room. At the nursing home, it was procedure to get turned every two hours (I felt like a rotisserie chicken half the time). I'd be lucky if I could fall back asleep before the aides would come again and cycle continued on and on, every night. Despite all my efforts (medication, meditation, white noise, etc.) of battling my insomnia, it's an on going issue.

Being over tired often sets the tone for my day. There's many days that my lack of sleep seems to zap me of all motivation. The first few years post accident, I got up in my wheelchair every day (regardless of how I felt, partly because I had no choice in the facilities). Ever since I got a bedsore on my upper thigh in 2008, sitting up has become hit or miss. Sometimes I feel fine and other times I feel like I can't get back into bed or lay down fast enough. It makes me not want to get out of bed at all. For the past six months (give or take) I've been staying in bed 5-6 days per week. My nurses, aides & family sometimes get annoyed with me constantly being in bed, because they worry about my overall physical and mental well being. I understand that it's good for my body to sit in my chair, for blood flow, digestion and breathing. However, I'm already forced to sit up for two to three hours on the days my nurse comes, so on those days, I'm ready to lay down once they leave. I don't see the point in going through the hassle of getting fully dressed and transferred into my chair, only to want to reverse the process an hour later. It's just not worth it to me.

Ironically, I probably sit up the same amount of time in my bed as the days I get up into my chair. The difference is, I can lie down when ever I want, in bed. If I'm in my chair, I need to be transferred and partially undressed. My catheter bags also need to be switched and cleaned. Given the hassle and the fact that my aides come at set times, getting up just becomes less appealing, especially if I'm already tired, or feeling sick. On top of all that, the only thing I can't do in bed is paint. The list of activities I can do on my own is pretty slim, so most days it doesn't really matter if I'm sitting in a bed, or a chair. I can even do most things while laying down: watch tv, read, talk on the phone, use my iPad, control my PC by mouse & play Nintendo DS.

I could understand concern if I was completely lethargic and apathetic and spent my entire days sleeping or being zoned out. To me, that's giving up and it's not the case with me. Most people just fail to consider that there's still a big portion of my day that is out of my control and spent doing things I'd rather not be doing. I can't do things on a whim, or instantaneously, because I'm always relying on someone else to assist me. On top of that, there's activities of daily life (ADLs) that are simple to a healthy person, but have become stressful and traumatic for me. Gong to the bathroom is the number one stressor in my life. I don't even usually discuss it in any detail, out of embarrassment and shame. Unfortunately, I have no choice in the matter. I have to eat, therefore I have to go the bathroom. Something that should be a personal, private matter, now practically dictates my schedule and involves several people.

Most people probably don't even consider how paralysis (high level injuries and severe degenerative diseases) can effect every tiny detail of someone's life. I think it's too disturbing, or sad for some people to even want to know. Then there's the people who could care less, because it has no impact on their lives. The truth is, anyone could be in my shoes. It took less than a minute for my life to change, forever. It frustrates me that most people don't see how lucky they are, just to be able to care for themselves. Things that were once second nature to me, like brushing my teeth, taking a shower or going to the bathroom, have become things I dread.

I cringe every other night, because I know the nurse is coming the next morning. Having to have a permanent catheter is bad enough, but needing a bowel regimen makes me want to disappear into the floor and never eat again. It's not something that's easy to empathize with, because most people don't even know what a bowel regimen (or bowel program) is and because the normal person has sensation. It can't be that bad right? Yes. Yes, it can. For starters, just the fact that another human being has to assist me with something I had been doing solo since I was probably three years old, is stressful. It's not an aspect of life I've ever been comfortable with, and now my feelings of embarrassment and stress are off the charts. Secondly, I can't feel any part of the process. I feel no urge to go, no indication that I've gone and no relief or comfort in having gone. A nurse has to essentially, manually stimulate my body to go and then continue to check inside to see if it's worked. I'm usually physically uncomfortable the entire time, because it forces my blood pressure to rise and the commode is not very comfortable. The whole ordeal can take up to two hours, and I have to go through it every other day. It's also very emotionally draining for me. Just imagine having a stranger (at first. I have several nurses that I've gotten to know over time) sit with you in the bathroom while you go, and then clean your bottom for you. It's horrific, even though that scenario doesn't cover the full extent of the regimen.

Even with a bowel regimen, there's always the wonderful anxiety that comes with being incontinent, and never knowing when or if my body may decide to "go" for no reason at all. Having to wear Depends in your twenties and thirties, is not an easy pill to swallow. Having the fear of an accident is on my mind every day, and especially if I have plans to go out or have people over. The threat of it happening is very real and often completely unpredictable. I try to avoid know causes, like antibiotics, but there have been many, many days where I've needed to cancel plans last minute. Either for fear of incontinence, or feeling ill if things don't go smoothly. I try my best to ignore it all when it's going on, but I'm never that successful. After that, I have my shower. Yay. Yet another person to see me naked and have to wash (aka touch) every inch of me. Then it's all topped off with having someone else brush my teeth, hair and feed me breakfast (like an infant). It's exhausting. Unfortunately, it hasn't gotten any easier over time, for me to deal with most of the daily ADLs.

I almost never discuss my personal care with people other than nurses, aides and a handful of friends and family. I'm writing about it today, because I'm just so fed up. I feel like people should know EVERY aspect of living with paralysis. Sometimes I feel like going outside to find a random huge crowd of people and start shouting through a megaphone all of the stuff I deal with, everyday. It also makes it hard for me to be sympathetic to most people (healthy), because their "problems" all seem so trivial and stupid to me. I'd welcome most things people complaint about, in exchange for being able to care for myself. I get so angry and upset, because people expect me to live like this and either have no clue what my (or other people in my situation) life is really like, or if they do know (medical professionals), they still have no cure, or solution. "Just deal with it, and move on."

The worst is when people tell me, "well, at least you're still alive." Yeah. Great! It's not exactly easy to just forget twenty four years of a "normal" life and just be content with living, for the sake of being alive. The fact of the matter is, I'm left with few choices. If I want to "move on" with my life, it means having to deal with ALL the stressors, every second of the day. It means acknowledging the fact that I'll be chronically tired, often sick (UTIs are very common with catheters, despite how clean you are), have instances of incontinence, reliant on medication, need assistance from others, be susceptible to skin break down, be at risk of dying from respiratory infections, weakening bones, and inevitably have to do things that make me very uncomfortable (for my own health and cleanliness). It's my life. Take it or leave it. I don't get a breather. I can't remove myself from the situation. There will be many days that I'm sad, ill, or don't want to bothered with anyone, or anything that's not absolutely necessary. I can't understand why or how people still expect more.

Just because I'm feeling ill or tired, or just don't want to get out of bed, doesn't mean I'm giving up. Although I might not be as busy as I was the first two years I've lived in my apartment (2007-2009), I still try my best to be productive. I'm still painting, albeit much less frequently. However, I've continued to look for ways to share my artwork and have been exploring digital art. I work on my website from time to time and try to post at least two blogs per month. On top of that, I'm always networking and hunting for ways to help advocate for a cure. My intentions are always to raise awareness. I don't strive to be an inspiration or motivator for other disabled people. Other people with disabilities (paralysis specifically) already know what it's like to deal with my day to day struggles. Either that, or they were born disabled and have a totally different perspective.

I can't speak for anyone else, but I can educate people on the facts and use my life as an example. I don't expect other people to cope the way I do. Every person has their own story. Every person that's had a spinal cord injury goes through a unique experience. Your lifestyle, age and health all factor into how much loss you have to face. Each injury is unique. My goal is solely to educate the general public about paralysis and open people's eyes to what it takes to keep moving forward and all the obstacles that come along with paralysis. No one should have to live with paralysis and I feel it's important that people understand why we so desperately need a cure.

Personally, I'm at a point in my life (and my injury) where I have a tiny glimmer of hope left for a cure(that I'll be able to benefit from), but live each day at a time. In my mind, I'll be paralyzed until I die. If a cure is found, that'll be fantastic, but I have to face the reality of the present. I can't plan my life around "someday", "might", or "if." The truth of the matter is that, most days I don't feel motivated. Many days seem overwhelming. I'm sick of being sick. It's incredibly hard having a chronic condition. There are certain things that are inevitable and at times it's hard to face the day, because I know what's coming. It's never easy, but I try my best. I think that's good enough.

Sent from my iPad

Pain in The Butt

I haven't been feeling well for a while now. My tolerance for sitting up in my chair has been decreasing, ever since I had that pressure sore on my thigh a couple of years ago. I used to be able to tolerate sitting eight hours (or more) every day. Now I typically feel wiped out after only four hours. Even though I'm paralyzed, with hardly any sensation, my body compensates by presenting me with certain signals: chills, cold sweat, profuse sweating on only one side of my face, tingling sensations, fever and tightness in my chest. The signals are called autonomic dysreflexia (common for people with high injuries like mine), and are my body's way of alerting me to a problem. The bad thing, is the fact that dysreflexic symptoms are secondary symptoms and I have no real way of knowing what the cause is. I tend to go down a mental checklist and try and rule out common possibilities: blocked catheter, wrinkle in clothing, a pressure area, my feet, bowel issues and my position. It's normally one of the things on the list and once it is resolved, the dysreflexic symptoms go away.


Most of the time, dysreflexia is only a minor discomfort, that I've learned to deal with. However, there are rare occasions when we (my caregiver and I) can't figure out the cause or I know the cause, but don't have help nearby. It is especially frustrating when there is nothing to pin it on and I end up feeling sick for long periods of time. In many cases, I think it is caused by urinary tract infections or indigestion. I try to avoid taking antibiotics at all costs, because they reek havoc with my bowels and sometimes cause nausea.The dangerous and/or scary part aboutdysreflexia is the fact that the majority of the symptoms are caused by my blood pressure rising. Since I can't feel the pain my body feels, it elevates my blood pressure and that's what causes the secondary symptoms. If the problem causing the pain or discomfort isn't found, then my pressure will continuously rise and I risk having a stroke. When it gets very high I feel as though I have a vice grip around my ribs, squeezing me and an immense heaviness where my ribcage meets. If you've ever had pneumonia, you are familiar with the feeling, although in my case it has nothing to do with my lungs. I do run low grade fevers quite often; always starting in the late afternoon, after I've been sitting a while. I can tell as soon as they come on, because I begin to feel very lethargic.Thankfully, I haven't had any high fevers in a long time. The first year after my accident I had a few potentially lethal fevers, that hit 106 degrees Fahrenheit or more.


Normally, I chalk up my crumby feelings to my catheter and try not to let it bother me. Lately though, I've been getting the tightness in my chest too often. It forces me to feel as though I have to lay down, because that's the only thing I've found that helps the symptoms subside at all. The tightness doesn't go away until I've laid down awhile. Aside from the discomfort, it's been really annoying not being able to pinpoint the cause. In a lot of cases, even the doctors have no way of knowing why I experience dysreflexic symptoms and they tend to blame it on one another. My urologist is always blaming my bowels, my physiatrist often thinks it's urological and my general doctor usually has no answer. Honestly, I know my body better than all of them and I often feel like it's a waste of time to be seen by doctors, since it's all a guessing game. I find doctors (at least mine) look for pills to solve everything and are quick to write out prescriptions. Most of my doctors are willing to give me prescriptions for specific things, as long as I ask. I'm sure it's because they know that it's impossible (in most cases) to know for sure what wrong with me and they rely on me to help figure out a diagnosis. During my first year post accident, I was easily taking over 20 pills each day. The bulk of my medicine is bowel and/or bladder related. In fact, I ran into problems a couple years back, because I was constantly taking antibiotics forUTIs (urinary tract infections). The antibiotics in turn, caused issues with my bowels and that's what led to my sore. It is so aggravating when the solution to one problem creates a new problem.


People with quadriplegia require bowel regimes or colostomy bags to go to the bathroom. It's a subject I've rarely discussed with anyone, besides my friends who are also paralyzed. Although, I'm not really comfortable talking about it, I think it's important that people learn all aspects about paralysis. I want people to understand exactly what I go through and why it is so crucial that we find a cure. I share things, at the expense of feeling embarrassed, because I want people to see the whole picture. Going to the bathroom (bowel movement) is my least favorite subject and yet, I find my life revolving around the bathroom, these days. What's worst is that I have had issues with using the restroom my whole life. I don't know why and I'm sure psychologists would give me some complex Freudian theory as an explanation. All I know, is that it is a part of life that I've never felt comfortable about. In a way, I feel like it's the epitome of un-ladylike behavior.


I realize that going to the bathroom is not something one can choose to do or not to do and that everyone does it. I've just always seen it as an embarrassing part of life; one aspect that was acceptable for others, but not myself. I put myself through a lot of physical pain through the years because of my issues (paranoia, disgust, embarrassment) because I absolutely could not bring myself to "go" just anywhere. I'd rather have stomach cramps, than use a public restroom or a friend's bathroom. I used to treat going to the bathroom like some covert operation; the objective being not to leave evidence behind. I know it probably sounds silly to most people, never the less, it's hard to change how you feel towards something, especially when there's not much you can do to change it. I still hate going to the bathroom, more so than ever, because I no longer have any privacy. It's like my worst nightmare, having to have someone else assist me in this area. There's also the constant worry over accidents, since I have no control or sensations whatsoever. Having a bowel regime is supposed to keep your body on a schedule and is designed to prevent accidents, however nothing is full proof. I can't even begin to explain the stress related to never knowing or worrying about the fact that your body can decide to do whatever it wants, without warning. It's always in the back of my mind.


Being paralyzed (especially quadriplegic) often requires having people in your face much more than you might want or like. It's hard to have any true privacy when you need someone helping you with ever single aspect of life. Given the fact that I've always been extremely independent, it can feel suffocating at times to hardly ever have time alone. On top of that, there are so many personal hygiene things that adults normally do for themselves that I need help with. At times it can be very embarrassing or uncomfortable accepting help. There are tons of "simple"ADLs (activities of daily living) that I need help with that the average person might not even think about, because they are second nature: shaving, blowing your nose, going to the bathroom, bathing, trimming finger/toe nails, cleaning your ears, dressing, applying cream/lotion, getting an eye lash out of your eye, scratching an itch, brushing your teeth, brushing/styling your hair, applying make up, using a napkin when you eat, changing pads/diapers/soiled clothing, eating and so on and so forth. Under normal circumstances, I wouldn't have dreamed of asking for help with most of the things I mentioned. Being healthy and able to care for one's self is something most people don't think about and take for granted. I'm also guilty of thinking that way, prior to my accident. It wasn't until after my injury that I realized how lucky I was before and how many little things are effected by paralysis. Paralysis has changed my entire perspective on life.


For me, the bowel regime is the ultimate torture and most embarrassing thing that I need help with. It's been over four years since my accident and it still hasn't gotten any easier to deal with having other people involved in such a private aspect of life. The worst part about it, is the fact that I have absolutely no choice in the matter. If I could have some sort of nutrient injection and just give up food, I would. I realize how crazy it sounds, but it's an example I use, to demonstrate how much it bothers me. Food is one of the few pleasures I have left and I'd still give it up, if it meant never having to go to the bathroom again. Unfortunately, I need to eat to survive and my body needs to get rid of the waste. It just stinks (no pun intended) not being able to control the most basic functions. Being a woman adds even more things to the list of things I can no longer control or be able to care for myself. I can't help but think about how unfair it all seems. I sometimes ask God why he/she couldn't give me a little bit of a break. Is it too much to ask to not have a menstrual cycle? I lost it for six months post accident and wish it wouldn't have come back. I mean, so many other functions were lost, why not that one too? It's not like I'm going to be having children anytime soon. Having to have other people help during that time each month ranks second in terms of embarrassment.Is it too much to ask to not have to constantly worry about incontinence? The whole point of a bowel regime is to prevent accidents and yet they still occur from time to time. It's hard to explain how awful I feel, when accidents occur. Most of my aides, nurses and family try to down play it, like it's no big deal, but I have a feeling they'd think differently if it was them.




The entire subject of incontinence upsets me. It is not easy to cope with the knowledge that I have no control over my own body, or that I have to endure a bowel program for as long as I am paralyzed. I won't even consider the idea of having a colostomy bag. It is not an option. I already know that having a colostomy bag would bother me even more than having to go through a bowl program. The thought of having a bag filled with feces strapped to me, makes me sick to my stomach. As it stands, a nurse comes every other day for three hours and I have to take six pills a day, to keep my body functions working on a routine. Although it can be tedious, I feel as though I'm left with no choice, but to grin and bear the situation the way it is. Having a bowel program (I'll try and spare you from as much detail as possible) consists of having another person manually stimulate your body into going to the bathroom. Someone like me (quadriplegic) no longer feels the sensation of needing to go to the bathroom, nor the feeling of going, nor the ability to control the required muscles. The person assisting with the bowel program is in essence, giving your system a jump start to signal it into doing what it needs to do. It is also the assistant's (usually a nurse) job to make sure that the bowel regime was a success, by manually checking to ensure that your body has no more waste it needs to get rid of. If it's done on a set schedule and you take your medication and watch your diet, it's supposed to be pretty consistent and give you the peace of mind that you can go through your day without having to worry. When things are going well (usually only ever lasts a couple of months at best), I do a decent job of coping and try to block out the situation as best I can.




It's frustrating and depressing when I do everything I'm supposed to do and problems arise regardless. It makes me want to scream. Why I am going through all this, if I'm still having to worry or feel on edge?! Not to mention, there are secondary issues that come along with the fear of incontinence that are not only embarrassing, but also unhealthy. As I mentioned early, if incontinence happens too frequently, the person risks having skin breakdown and sores. My latest discovery, is that people with spinal cord injuries are also prone to getting hemorrhoids. Oh joy! Yet another embarrassing thing I can add to my list of things I wish I didn't need help with. I never realized how common hemorrhoids actually are. Apparently, most women get them after childbirth. At this stage in my life I would probably be dealing with them anyway (from having a child), even if I never got injured. The difference now, is that there is no way of getting relief, other than topical treatments, like creams. So although hemorrhoids may be a common problem, it becomes a much more complicated issue for people with paralysis. Unlike the average person, I don't have the luxury of being able to stand or tolerate long periods of time laying on my side. On top of that, the very thing I hate the most (bowel program) is one of the main causes and primary irritant to hemorrhoids. I feel like I can't win.


Some people are better than others at dealing with needing to have help with hygiene and toileting issues. I suppose it all depends on individual personalities and how the person dealt with that aspect of life, prior to their injury. I've always had bathroom hang-ups and being paralyzed just magnifies those feelings ten fold. In general, I find that men are much more laid back about topic. Statistically speaking, there is a greater percentage of men, versus women with spinal cord injuries and the vast majority of my paralyzed friends are men. By comparison, men also seem to enjoy toilet humor and talk more openly about the subject, whether injured or not. Women with spinal cord injuries have additional issues that can add to the stress and depression, often related to paralysis. Men don't have the potential to bear children or the burdens of menstruation. It's heartbreaking to know that I might never experience pregnancy (Technically I can carry a child, but I'd have no sensation and it would be high risk. Not to mention, I'd have no ability to physically care for a baby), breastfeeding or holding my own child. These are things I've dreamed of and imagined, since I was a young girl. Men with spinal cord injuries don't have to deal with all the extra problems that women face. I'm not saying men have it easy. No one living with paralysis has it easy. I'm merely demonstrating the obstacles I face as a paralyzed woman and my difficulties dealing with the care I need.


Not all people with paralysis will agree with me, in terms of how they feel about the care they need. Like I said, each case is unique: every injury, every body, coping skills, treatments and attitude. Despite how poorly or well a person deals with living with paralysis, I'm certain that 100% of the people in the spinal cord injury would give anything to have their health back. I doubt anyone would choose help over the ability to care for one's self independently. I think it is absolutely vital that people understand paralysis, especially given the fact that a spinal cord injury could happen to anyone, at any age. 


The things I dream about now, are the most basic abilities that most people never even think about. So many people are wrapped up in trivial problems and materialistic attachments . I think it's important to help others understand how lucky they really are and to help them re-focus their priorities. As embarrassing and disturbing my conversations, blogs or interviews are at times, it is all worth it, if it opens the average person's eyes to what it mean to be paralyzed. When I think about the out pouring of generosity Americans have shown towards issues of human suffering (like Haiti, New Orleans,Darfur , etc.), I know that people will support a cure. I think two of the key factors to curing paralysis are awareness & funding. That is why I feel it is important to be open and honest. It's not about pity. It's about raising public awareness. People need to know the true, everyday obstacles that paralysis poses, so that they we be motivated to find a cure. Sugar coating my life by talking about all the things I can still do will not help bring a cure. Yes, life isn't over after paralysis, but why should I have to settle for compromise for the rest of my life? My injury has taught me to value the core things in life: love, family/friends & health. If I could regain the ability to care for myself, I'd be a happy person the rest of my life.




To learn more about Autonomic Dysreflexia, check out this link: Autonomic Dysreflexia