Friday, March 4, 2011

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.

- Posted using BlogPress from my iPad


  1. I don't think that any doctor is going to give you the detailed answers you're looking for. In the hospital, we repeatedly asked the doctors to tell us what would happen to my mom when we took the vent out. We told them we needed to know what death was really like, what physical things we could expect. No one was honest with us. I spent a couple night googling on my phone to try and find out anything I could so that I wouldn't be surprised by anything. It helped. I read some horrible stories and was terrified, but luckily she didn't experience hose things.

    Not that I'm condoning any of this. Just saying that I understand your need for information.

    I think if you were to refuse food and/or water, they may admit you to the hospital or a facility claiming severe depression and suicidal tendencies. I'm pretty sure a medical professional can't just sit by and let you starve yourself to death. And I'm pretty sure hospice is only for terminal patients. If they determine that your condition is manageable and not terminal then you wouldn't qualify.

  2. I know for sure that I do have a right to refuse nutrition & hydration. By law they can't force an IV or feeding tube on me. I already state that I don't want either in my living will as well. I talked to my dr. about this & it's the one thing he did seem pretty sure about. Plus, I've done quite a bit of reading up on this option. It's all the medicines & BP I'm wondering most about, also about qualifying for hospice. Given the fact my condition is so severe, and that I can't live without the intervention of others, I feel it should qualify. That's just my personal opinion though. I just feel as though this lifestyle is so unnatural. I mean, if I truly left my life in God's hands, I'd die, because I have no means of fending for myself. It's only because our society has the resources and the means to provide me with help, medications & treatments that I'm still alive. If it were left to "natural selection", or I lived in a third world country, I would've died shortly after my accident. It is for those reasons, and the fact that I genuinely feel as though every day is a fight to live, that I feel I should also have the right to someday say enough is enough & that people will understand why, and respect my wishes. I just wish our country was more open minded & progressive, in terms of euthanasia. I'm not talking about for people that are able bodied & depressed. I'm talking about cases where people already have living wills in place and for extreme terminal illness and/or chronic deteriorating illnesses like: Alzheimers, ALS, MS, SCIs, MD, Cancer, Comas, Ect.

  3. I know what you're saying about natural selection and the fact that you're only here because of extraordinary measures (i.e. vent) that you wouldn't choose for yourself today.

    I guess I disagree with you as far as leaving it in God's hands. In my opinion, which I'll admit is based mostly on my faith, everything is in God's hands. You didn't die that day because it wasn't your time to die. He kept you alive for a reason, a reason which I don't understand because you've been in nothing but pain since -- physical and emotional. I think a lot lately about what the priest said at my mom's service about people who suffer greatly on earth get a ticket straight to Heaven. Again, this is based on faith and religion, but I believe he may be right. If we all have to be completely pure and perfect before entering Heaven, then maybe some of us experience that cleansing here on earth rather than after death.

    I don't mean to go all "Crazy Christian" on you, but it's my faith that keeps me going. I have to believe there is more than this and that there is something much, much better awaiting us. However, being Catholic, I do believe that suicide is wrong. It's not up to us to end our lives; that's something only God can do. Taking that kind of power into our own hands is just too unnatural for me to agree with. It's difficult because it rips my heart apart to see you so completely unhappy, and I've often asked God to let me take your place, but I truly believe that you're still here because there is more left for you to do.

  4. 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. Ultimately, it's fear and doubt that keep me here.

  5. I agree with Erin. I have mentioned to you before that your accident happened for a reason. Let me ask you this..when you were "able-bodied" did you appreciate or respect your life as much as you do now?
    Many people on Earth go about their lives doing god knows what..drinking, doing drugs, being promiscous, being lazy, abusing trust and hospitality from others until in one fell is taken away. Until that moment do people not realize how good life was. Then the finger pointing begins, and the "well if God loved me so much why am i here" begins. Since you are reading the Bible you should have seen that it is stated that he is a god of free will. He LETS you live your life how you want to live it. If he wasn't a god of free will, you might as well call him a dictator. What joy and fun would there be in life if we were created without experiencing many life events. At the same time, God will give you and me many chances until he has had enough. Then he will ALLOW something to happen to grab your attention. If that doesn't work, it is also stated in the bible that "He will not tarry with Man forever". He will let you go because you just absolutely refused.
    Why should God give you everything? or give me everything? you can use the same analogy with people that abuse help lines like welfare and social security, and yet the government still wants to give many things to people without giving people the incentive to EARN. if god gave you everything in your life, would you appreciate it or be as thankful? i know for a fact i wouldn't. also, why should he give you everything you want, without you returning something, mainly your love, trust, and faith in him. you have to give in order to receive. you think for one second he doesn't know you are unhappy? he knows, but he ain't gonna give you want you want until you start opening up to him. it ain't happening christina. God puts us through different fires, and ultimately it is faith that brings us out of the hole. i believe when you are pumped with something day in and day out, like religion in your house, with such rigidity, the individual will be turned off by it. I think in retrospect, is what you are going through. The catholic faith can be very rigid, too rigid. Tell me where in the Bible does it state that a man priest is not allowed to be with a woman. God created woman so that man can have a helper and not be alone. There are many "man-made" rules in the catholic faith that are just absurd. Things like that turn people off. Priests back in the day were married. Some of the most respected leaders in religion in God's time like Abraham, David, had a woman.
    You say you hate your life but yet want God to give you life. You need to start loving yourself and respecting yourself in order to see results. You also say "loved-ones" don't understand you, christina that's bull-shit. it is an insult to me and erin, and other people when you say stuff like that. we know what you are going through, but the fact that we are "able-bodied" somehow clouds our judgement on your feelings??? i will have to agree with your friend Miriam, okay so if "we understood" what difference would it make. it still doesn't change anything. if you want to be let go, then close your doors and tell everybody to get the hell out. i that really what you want? then i feel that my and Erin's friendship, the heartaches, and help we all have offered were absolutely for nothing. we know you are unhappy, but it makes US unhappy when you say things like that, and how little you value your life. we battle with you everyday and wish nothing more than a cure for you and millions of people with different diseases. i believe there is a cure already, and i also believe is not going to be available for financial reasons. is money lost for many health care fields. it sucks, but it is the truth.

  6. Chris, knowing about my life & knowing what it feels like to live in my shoes are two different things. You may think you have a grasp on what I go through, and all that I'm been through, but you don't. That doesn't mean that I don't believe you care about me. I know you do. I know it hurts my friends and family to see me suffering.
    It like me saying I understand what it's like to be a mother. I can imagine what it might be like, but in reality I can never know what it's really like, unless I experience it first hand. The truth of the matter is, living with paralysis is something you can never fully understand, unless you've been through it. Your love and concern for me mean a lot. I'm thankful for my friends and family every day. Unfortunately, all the love and care in the world, doesn't cure my paralysis. It doesn't mean I don't appreciate it. It's just that I'm suffering, and no one has the power to give me my freedom, independence and privacy back. Without those things, I'm going to continue to suffer, despite how many people care about me. You're not the one that's constantly sick. You didn't lose everything you had over night. You can't know what that feels like.

  7. GRRRRR...i pressed something by accident and completely erased the comment i was about to post and now i can't retrieve it. pisses me off.
    anywhoo the whole gist of the comment was, although we may not be in a wheelchair, we all go through the feelings you are going through but at different extremes. we don't have to be in a certain situation to understand what another person is feeling. and you have certainly have not lost everything. compare your life to the people you left behind at kessler and cheshire. most of those people don't have anywhere near what you have that they can call their own. some of them that you probably never met are probably worse off than you, in the sense that they are quads but can't speak or voice their concerns despite being fully understanding of their surroundings. you can regain some of the things you have lost, like love, but dammit girl you are thick-headed. you also have way TOO much potential and life to constantly want to leave this Earth. you still have loose-ends to tie. what kind of legacy do you want to leave behind, one that is fulfulling despite your disability or one full of misery and sadness wondering for the rest of your life "what if"? you have a choice. start seeing the wonderful, BEAUTIFUL, and strong christina that we all see and learn to look past the wheelchair. you start doing that, i can guarantee your life will start turning around. if you don't you will wake up every morning, and look at yourself in the mirror with disgust like i have seen you do it.

  8. Hi Chrissy, I just stumbled upon your blog. I am not a doctor, I am a massage therapist and esthetician and have trained in holistic therapies. My sister-in-law was paralyzed (para not quad)a little over a year ago at the age of 21. I do not blame you for feeling the way you do. I am always amazed that my sis-in law (liz) is still in such good spirits and doesn't show the world the misery I know she experiences. Although i realize the staggering difference between being a para and a quad, I just thought I'd share a few things about Liz's journey since the accident, as I have been her primary care giver. First of all, Liz comes from a very poor and uneducated family. She has no money and yet she has more than anyone around her, therefore, shes not getting any help. After rehab following the accident, she was virtually discharged with no instructions to see doctors regularly and dealing with medicaid has made it seem futile anyway. She has virtually no medical care whatsoever and I believe this may have been somewhat of a blessing in the end. She of course was prescribed many medications initially, all of which she stopped taking very early on. Now I realize for you this may not be an option. I just cannot imagine how someone could take all the meds that you are and NOT feel sick all the time. I also believe that being in the chair or bedridden, you have no choice but to notice how you feel physically in your body more than before. You are probably more sensitive now to meds, etc. than before. Is there any possibility of shortening the list of meds? I also know, being someone that has suffered from major depression my whole life, that when you feel really bad emotionally for consistent long periods of time, you will feel physically ill.
    Liz does not cath, she "strains". She uses all natural herbs and a diet full of fruits and veggies and uses the same method of straining for bms as well. She has not had any utis, etc. since the very beginning. she does not take any meds for bowel/bladder, no anti-depressants, no blood pressure meds. She was given a list of foods NOT TO EAT by a trusted naturopath/acupuncturist/nutitionist after he took her blood. This diet keeps her from swelling and other subtle body upsets caused by these foods (particular to HER body). She does physical therapy, acupuncture, and other alternative treatments such as biosyntonie (look it up). Just getting out of the house is purposeful for her. All of these things have helped tremendously and she has seen improvement in overall well being, state of mind, bowel and bladder issues and other amazing results. Again, I realize the severe difference in your cases, but I just thought I'd share. Oh yeah, I also massage Liz. While she can't feel the lower half, it still relaxes her and provides many physical benefits. Forgive my jumbled paragraph, I just kinda spit stuff out at you. We're not that far from you. We are in Long Island. Do you get massage? reiki? meditate? please feel free to contact me if you like. Also, check out My guru, my savior. try it. much love