The Chronic Life Style

When you live with one or two or even more chronic illnesses your life changes. You lose something. Life becomes medicalized. You are removed from society, even if society doesn’t see it. Some conditions are blatantly obvious, but others may be hidden by clothing, misinformation, or even great efforts by the patient. You become a patient. Likely you also lose patience with the practice of medicine. Depending on the rarity of your disease or diseases you rapidly eschew laymen’s terms, having to research so that you can teach your doctor about the latest treatments.

It may feel like you should give up on doctors, but you may need medicine in order to have any sort of quality of life. Painful procedures including biopsies may become a regular requirement for treatment. You will have a team of doctors, none of whom communicate with one another. The coordination of this team depends on you. Most doctors will try treatments that do not corelate, and many will eventually give up on you. They want to treat you with a cookie cutter treatment, though for most rare conditions these do not exist because the pharmacutical company cannot make enough money and doesn’t really care if you are in pain.

You spend most of your life in a waiting room, and once you have a doctor in a room with you there is often a fight to get them to listen to you. Eventually, you learn how to make them listen, though this comes with practice. You are known by your first name by a pharmacist if they care. You learn to count your painmeds at the counter if they don’t. Sometimes they pretend to care just to steal your medicine.

Your doctors all want you to take dozens of pills, and often put you at risk for an overdose if you do not know why you are taking other things or their side effects. This burden can be very heavy if the pain is effecting your cognitive function. Some doctors will ignore what you want, they will ignore your chart and may prescribe drugs that you are allergic to. They then get offended when you point out that the medication will harm you. You don’t matter to these doctors and they are often specialists. You learn soon too, that you want a doctor freshly out of med school, because they are open minded and are often the ones who remember the names of rare diseases, but you want the experience of a doctor who has been at this for years.

There is no option for both, you can either have inexperience and passion or the doctor who has been dulled by years in the system. If you go to a hospital with even one medical student you will be shown off like a side show freak, because you are rare and fascinating. They will prod you, even if your condition has nothing to do with your visit. If you have an ear ache, they will still want you to flex your joints or to poke your skin to see it’s odd reactions. They all want to interview you or treat you so that they can write a paper on your condition. None of them keep in mind the humiliation that some of their questions can cause. Some doctors do not ask permission before telling these students about you, violating your HIPPA rights.

At other hospitals the internists may be in the same position as medical students, though they are much rarer. Often the internists will arrive and will ask permission. The curiosity still gleams in their eyes but they are not going to ask the questions with as much bluntness, a sign of mental maturation. Still, even if you are a small child, you forget to have a childhood. Doctor’s don’t really seem to understand that you lose your personal life.

The condition may have treatments, but many of them might be surgical. You could have a few conditions that cancel out the treatment options of others. The horrible sensation of turning into a grotesque monster may hit you. At this point, or even before, many with Chronic conditions turn to thoughts of suicide. Some even commit suicide, abandoning their families and lives. Some choose this route because they were abandoned instead. All Chronic Illnesses come with a side risk of severe and Chronic depression.

You might start laughing at every new diagnosis. You might hear the words “rare” or “genetic” and burst into giggles. They aren’t sounds of joy but it is really a mask for your horror. Each diagnosis has the same grief process. Sometimes you may be able to skip denial but you can never skip over the tears that you cry when you are alone. Even when you have a support system, they can’t always help you to feel better.

As your condition progresses you forget to do things such as buying groceries, or you have to choose between the medication that is vital to you and your pain medication. Many people with chronic conditions are looked down on if they need a handicapped space to make it through their shopping. Some careen through the store in a rush trying to get everything done before the pain overwhelms them, or the fatigue. Others use a motor cart provided by the store, praying that some little old lady doesn’t see them. They might feel guilt the first few times, but the ability to buy groceries with diminished pain is such a huge relief that they continue to use the carts.

At this point some continue to work, though others may lose their jobs. Not only are most people with Chronic conditions, even those which are supposedly pain free, fighting depression but the treatments may cost them their ability to work. If, as with Hidradenitis Supprativa, there is no treatment beyond surgery the patient will likely wait until the condition has debilitated them completely depriving them of their livelihoods. Some of these conditions are listed in the government’s database of conditions which need expeditious approval for a Disability claim.

Due to the listing in the Disability Database, the patient may run across a person who desires their disease or at least the diagnosis. This can be in the waiting room of the doctor, in line at the Social Security Administration Office, and even online, when seeking information and hope. This can often prevent a patient from seeing this doctor again. The patient might notify their doctor or the receptionist about the conversation. Instead they likely are too ashamed by what they have heard. Usually the person who has stated they desire this horrible condition believes it is truly painless, and considers it the easy way out. They are unaware of the detrimnetal effect that their words might have.

The patient with disability still faces the cyclic visitations to a doctor that the patient who has retained work or has made the choice to try and deny the need for Disability Benefits does. No chronic patient is exempt, though there may be enough relief from their condition to give them the sense of remission. Sadly due to the Chronic nature of any Chronic condition, there is no truth to this and they face the risk of a deepening depression or the onset of depression depending on their personality.

It is recommended by most physicians that patients seek therapy, although the psychiatric community eschews supporting most pain patients, preferring to tell them that their condition is in their head. The patient likely has spent years fighting for a diagnosis and will often have trouble with the notion of seeing a therapist again due to the traumatic treatment recieved before. This is not universal, though it is more common than a happy history with a therapist. This does not mean that therapy is not a good choice, as the state of mind can effect the reception of treatment by a medical physician.

Many patients will seek a support group before seeking out a therapist. With the advent of the Internet there has been an upsurge in email groups. Some patients may struggle with finding a group where they “mesh”. This struggle can be due to race, religion, or even prejudice faced against certain conditions. The rampant discrimination with in the chronic illness community can at times push people back into the mental distress mentioned previously. Many support groups try to modify the twelve step system or insist on a certain religious belief. Some members of support groups may be religious centric, focusing on prayer. Not every chronic patient wants to pray constantly. Many have had crisis of religion and are also seeking out their beliefs. This means that the religious patients who have turned to god may agitate their mental stress further.

This does not mean that any of these groups should disband, it merely means that a further support structure must be created and maintained by the patient. The patient has at this point forgotten that they can be more than a last name in a waiting room, or a first name if their last name is moderately difficult to pronounce. The patient may have had multiple personal crisis, and many years may have passed. Each patient progresses through various points in this article, and perhaps all of them. Some may be exceedingly lucky and find the perfect doctor, therapist, and have the perfect family who supports them unconditionally. These patients are rare. They also live with Unicorns.

Depending on the condition and the level of gore that the patient faces romantic interludes might be impinged. It may become difficult to hold their children, or to touch their pets. Fear may also be an issue with the patient’s spouse. Sadly, many chronic pain patients face marital crisis though a significant number of these crisis actually strengthen the relationships. Chronic Illness does not preclude the patient from desiring romance, love, or affection despite the potential for an increased level of anger as a side effect for the pain. The patient might begin to display outbursts of rage, instead of depression. They may also seem to mirror the bipolar patient (if this is not their chronic condition) with Mood Swings.

Some of these emotional reactions are the natural response to the brain altering it’s function to try and work around chronic pain. Others may be a response or side effect to treatment. Some medications excaserbate depression, others may mask the symptoms but only for short periods of time. The end of the masking period will be followed by a worsening of the condition.

With patients who have only surgery as an option there is the risk of being scammed by snake oil salesmen, untrained herbalists, and finks. A patient must research every medication, doctor, and treatment. It has become the patient who knows more than the doctor.

In order to return to being a person instead of the patient, a patient may tell their doctor to sod off. This is otherwise known as firing the incompetent buffoon. This is not always effective, as the medicalization of their humanity may have progressed rapidly and with great depth. The patient has found that resistance is futile. It appears that the Chronic Life Style is much like that of the Borg, as the patient has lost personal identity with in their medical file, beyond DNA evidence. The patient has discovered the medical hive mind, and thus their own knowledge has given them the ability to connect to it.

Published By Dr. Sarc A. Sim in the American Muddicle Association Joynal.

Author’s Note:

This was my attempt to try and vent. I spent last night trying to find out if I needed surgery for a very painful abscess that stayed hidden in my flesh for a good while. The cavernous hole was larger than a baseball, and showed up only as a small spot. The current treatment prescribed was oral antibiotics, which I stopped this morning. They made my stomach hurt and effected my reactions to the sun too much to continue.

The incompetent dermatologist I wrote about before prescribed this and a topical antibiotic that I used last night. I am now being forced to choose between improvement in the skin itself with the sensation of being burned alive or a faster progression of this illness that has no real treatment besides surgery and skin grafts. I haven’t decided yet. I am not sure I can handle that much pain.

I also am trying to get over the feeling of being alone. I wrote before about my rejection of mainstream religion, and all of the HS groups I could find last night seemed to talk about how prayer is the only treatment. This left me feeling as if I should just go to sleep and never wake up. This is a step away from suicidal thoughts for me, but is very close. The urge to give up is universal, with any challenge.

The final nail in my emotional coffin was seeing pictures of the treatment for HS. My skin is unable to hold a stitch, which means that where someone else could have the skin literally cut out completely and grafted over I could not. I did determine, as my doctor never knows and I have yet to find a Dermatologist willing to treat me more than once that I likely do not need surgery as long as I drain the abscess hourly. I am doing this and the wound is already shrunk down to the size of a golf ball.

I know I have support here, and someone else who is reading this probably found out they aren’t alone. I am considering doing something that feels drastic. I am considering building a website to host an email support group, a forum to discuss medical things, and a place to discuss non medical things. This would be a place to congregate. There would be a selection for those with the need to talk about their religious choices, but it would be seperate from the main support group as those persons are more likely to find a support group that fits them. I hope that it is clear that I am not judging anyone based on their religious choices with this, yet I want to make a place where you do not have to be religious, of the same religion, or can be an athiest without being judged.

I dislike reading about how once someone started praying, eating parsley, and did penance they realized they are marked as a sinner and that is the end cause. Yes, this is an extreme form of self belief, yet with the more untreatable conditions, of which I have many, that this form of extremism is more prevalent. I believe that some persons who happen to believe in the more widely accepted religions just as the less widely accepted religions may go to extremes but the main groups do not.

I feel that this all needed explanation as some people may be offended by my words, and that is the last thing I want. However, I needed to vent my emotions in order to subvert the depression that is trying to take over my mind.

If you would be willing to help create a system as described, please either use the contact form and drop me a line or post in the comments section. I cannot do it alone, and I do not have enough time to make this a reality at this time. This of course is logical as any group needs more than one person. I am looking at the Yahoo Groups System, as well as some of the free services for a website.

Diagnosis! Gotta Catch’em all!

I am in an emotional upheaval. I found out today that Block Insurance does not have any non Walmart Eye doctors. All of the numbers they gave me were between disconnected or offices without actual vision care professionals. I also was told to choose between Walmart and Eye Masters which is the Walmart of eye care. Would you go to Walmart for diagnosis and treatment of anything medical? I won’t. I want options. I want to see a doctor I trust, not Mr. Walmart Doctor.

I spent several hours on hold, trying to get an appointment. My right eye has an existing hole in the retinae, but no one wants to treat it. Now that hole has some little friends. I can see them, the spots grow and most of my vision is gone in that eye. I can barely see my monitor, and am defendant on the Windows built in Magnifier to see. I no longer read paper, I can’t see it. I no longer watch TV. I listen to it. I did reach the point of yelling on the phone.

The conversations were comically inept. “Thank you for Calling Block Vision, what can I do for you today?” “Yes, I am calling to try and find a provider. I …” Interrupting me, “Did you use the automated system?” “Yes, and the numbers were either invalid or the offices wanted to charge me despite my qualifying for zero copay. I also am not comfortable with Walmart for my eyecare needs. I have some advanced care issues.” I made a mistake. I admitted I need more than they want to offer.

“Spell your name.” I did. “You can’t spell your name like that.” Since it is my name and has been for a long time, I would not know how to spell my legal name. My last name is the issue of course, not the first. I spell it again, and get the same response. I am done. I want to make this person cry, I want to rain fire down upon them. Instead I take a deep breath. “Could you please transfer me to someone else?” I did not ask for a supervisor yet. “If you cannot calm down I am goin to hang up on you.” “I am calm, I just asked for you to transfer me to someone else, I do not think we are communicating well.”

She hung up. I kept getting the same person too, and after six calls I let go. I was already in tears so I screamed. I cussed. I told her exactly how good she was at her job, and since they claim to record these conversations, I hoped her bosses listened in and fired her. Not my best move, but, being treated like crap gets to me. The last thing I want is to be blind, unable to move, and unable to hear. I am being told that all that I and anyone else who is on Medicaid (mostly children) deserve is WALMART?!

Walmart screws up everything. I want a real doctor. Not some brainless person who barely managed to graduate. I want someone I can put my faith in. Wouldn’t a real doctor be hired somewhere else? I am not saying that every doctor gets the cushy jobs but I want access to the doctor of my choice or at least a variety. I do not want to be told I am insane for desiring trust with my medical professionals. I do not want to be told I have to pay out of pocket because I am low income and have other medical issues. I want medical care.

I want to see. I miss being able to see the faces of my friends clearly. I miss being able to see far enough to give safe directions. I do not drive but, shouldn’t I be able to see the end of the hood? A van doesn’t have a very long hood. I also want to do more than push and push to try and get proper care. I am so tired. I am tired of having to advocate. I have been advocating for people and fighting my entire life. I have always been the caregiver. I want someone else to do it.

This doesn’t work however. I can’t just stop advocating. I can’t because I do not know how. I instead took the time to calm down enough to call the Governor. I left him a voicemail along the lines of this, “Governor Richardson, I am a voter who encourages others to vote, “I always start out with the secret threat that if you do not help me I will not vote for you. “I have been trying to find an eye care provider.I recieve SSI benefits and am on Medicaid via the COOLTS program. You have influence here, the program has farmed out their providership for vision care to Block Vision. Block Vision is only allowing a selection from Walmart and Eyemasters doctors, I cannot get an appointment with them and my vision is degenerating. I need your help to fight for your constituents.” I left my number, and I know I should have been calmer but my voice likely gives away my frustration and the fact that I have been crying for the last few hours.

I cannot see. I am thankfully able to type with my eyes closed but there are errors. What if I wait too long to see someone and wind up unable to save my sight? I am not faithful in the system. Right now I am afraid I will be deaf, blind, immobile, dealing with the Autism, and autoimmune. I have one of every type of disability, it seems. I am losing hope today.

If I want to pay for my eye care out of pocket, I can manage that how? They want more money than I get a month. Why are we choosing between Rent, Medicine, or Dental/Eyecare? Why is it you can eat but not see. Oh wait, I can’t afford food. I am a celiac. Silly me. Bread is at least seven dollars. I don’t buy bread. I don’t buy anything beyond just enough meat to survive. I am HUNGRY but there are no food programs that can accommodate my allergies. I am greedy to want that right? I am greedy to want someone to help me. I am greedy to want a break from advocacy. Right?

No matter how many other advocates there are, I feel alone. I feel as if there is no where to turn. I have to do this alone. I have to do this by myself. Who can I ask for help? What would they suggest that I have not done? I am all alone, as every advocate is at some level. There is only so much you can have someone else do for you.

It isn’t hopeless. I am after the jobs of the employees who hurt me today. That means someone else can be hired if they are fired for their incompetence. This might seem cruel, but, isn’t it just as cruel to mock someone for wanting medical care? It is just as cruel to treat someone like garbage because they are disabled. I have HUMAN rights. I have CIVIL rights. You want to mess with me? Go ahead. I bite.

Edit and End Notes:
I do not care what your God or Bible says about being alone either. I have been preached at, as if somehow my choice to not pray every time some idiot steps on my civil rights is my fault for being a non believer. I do not believe religion has much bearing on the affairs of the state. So, yes, this is a snarly article, and yes I admit I messed up by yelling and plan to keep fighting but leave your god out of my life. I haven’t needed your god to chance things for myself before, I will not need YOUR god now. Thanks for respecting my religion.

It is not religion that is shared when you ask an opinion or vent to me. I offer ideas. I do not expect you to worship me, my gods, nor is this the same as pointing out that I surely would feel better with YOUR God receiving my prayers. Seriously, are your gods somehow starving to death or something? I know plenty of people in those religions who are. So keep religion out of it. You won’t find my religious identity posted clearly anywhere.

Why I did not turn to “God”

I am too tired to sleep. Instead I decided to read some disabled blogs. I am not a Christian. I rejected Christianity a long time ago. I do not reject Christians but I do not share your beliefs. My own religious choices come from exploration, to seek what is right for me. Part of this comes from the fact that the God of the Christians was used as a tool to facilitate the abuses I suffered. “God hates you. You must die to please him.” “God hates women who have short hair, and that child has short hair. She must have the devil beaten out of her.”

Two out of thousands of excuses that their God fearin folk used to beat a child. They used god as a reason for why I did not deserve to eat. A reason for my mother to stay with a man who wanted her dead. Before I was aware of my disabilities, I heard often how a disabled person found god. I keep a Jesus figure in my couch for occassions to “find” him and make the conversation stop, with a good laugh.

I do not want to offend anyone, but, I am offended by disabled people always being portrayed as God Fearing White Men. The man who saved me yesterday was Black. I felt comforted by his presence, as if two strong arms held me. Does this make god a black man? Some say feelings of security all come from god.

I am well aware that this conversation is a bit controversial. I respect many people of many religions. I read a blog by Wheelie Catholic with great regularity. I just ignore her posts that are just about god if I am feeling uppity. I am leaving god as a lower case because I am a polytheist. I believe in multiple dieties. Not every person comprehends the notion of one omnipotent and infallible being.

I cannot believe in one god. Instead I believe all religions come from a root need. I need something to put my faith in. I still pray, just to the gods that my brain can fathom. Religion begins with one person, be they a prophet (IE Muhammed, Jesus, Buddha) or a Seer. They see this unadulterated light, they feel guidance from it, and explain what they see. People see the light through them.

Eventually Prophet Seer dies. How do the people still reach the light? They take paint to the window that they looked through, trying to outline what they remember, and what they themselves can see. Over time, through generations, people might add things that are not there. They might try and demonize people who do not see what is there from the same perspective. They might forget some important lessons.

This perspective has let me help people who ARE Christians. I respect your religious choices, and expect the same respect. I may not always have my expectations met, and I am a known idealist, but I will not discriminate. I am reminded with this line of thought about a woman who discussed her life with me.

She was healthy, not disabled, but depressed. She was going to commit suicide and had come to a bookstore to find how to books as well as books on how to heal after someone you love commits suicide to leave with her body for her children. She had sent her disabled child to visit family, so that she would not be the one to find her. She felt drawn to me, she could see me in the shoes of her daughter, productively assisting someone else.

We talked for several hours about her life, and she wanted to commit suicide because she felt helpless. She thought if she died, her daughter could obtain the insurance money and pay for her medical treatment. I debated with her on the invalidity of this thinking, I shared access to resources, and she left with books on how to train cats. She is alive, right now. Her daughter did not lose her caregiver or her mother.

Isn’t suicide verboten to Christians? Don’t you go to hell if you commit suicide?

As if this wasn’t controversial enough, now I am going to bring up Eugenics and Hitler. I am against human euthanasia. I never thought about it, before Teri Chaivo. I was too busy struggling in my own blind existance and praying I could survive. When I heard about how she died I wanted to scream. I wasn’t positive that no one was home in her mind. I felt a sick certainty in my gut, as I had felt the snap of bone in my back, that she had felt each and every agonizing moment.

I began to debate in my mind about the value of euthanasia. It is wrong. I do not need more pressure on me to just die. My own nephew asked me why I am not dead. I explained to him that just because I hurt, doesn’t mean I do not feel joy and that I want to live. I have a lot to laugh about. I have a lot to live for.

I have considered suicide rather recently, due to the pressures of environment. I took away the abuser, and I haven’t thought about death since. I am still fighting to get my pain meds. I am facing another two month stretch without pain medication and this is frightening. I don’t want someone to decide that because I am aware of my rights and will fight tooth and nail for my civil liberties to be respected, that I should die. I do not want people to be put to death or denied treatment because they lack insurance. I was denied proper medical care and it disabled me further, doctors ignoring broken bones left me in permanent agony.

If you help someone die, add pressure to their lives, or even neglect them to the point that they must starve, you are a murderer. Our government is full of murderers in my eyes. When I think on this, I question all of these prolifers. Why is it that they can fight for an unborn baby who may or may not live, but they fight FOR the right to kill me? Most people who contemplate suicide have a reason they feel despondent. Usually there are ways to remedy this.

There is a woman out there whose name I do not remember, I heard about her hunger strike, to fight against improper care. First and foremost, the media victim blamed her, soft peddling the facts. Secondly, problematic patients are often given substandard care. No extra care is given for those with cognitive challenges. Often, when someone reacts with violence they are triggered.

This all forgiving God I hear so much about, the one who disables people for their own good, the one who lets children get beaten in his name. I cannot fathom his reality. The faith of millions of people, lead by a bigot (that would be the Pope), has been open to question. I am not so blind as to presume all Catholics agree with the Pope or even respect him. I am aware that the world is shifting, truths are coming out about the history of the Catholic church. Truths are coming out everywhere about reality. We are on the cusp of great change.

I do not feel hope when someone tells me how they felt god. I have felt my gods just as equally. I do not want to be told I have to be religious or even faithful now that I am disabled, but I do want people to question the Euthanasia debate from a standpoint of their personal religion, as well as a social one. History shows the danger of Eugenics.

Hitler was a gay disabled dark haired Jewish man. He hated himself so much that he tried to eradicate all disabled, gay, non blonde persons, many of whom were Jews. Eugenics were his tool. Washington and Oregon both allow for human euthanasia, and I can tell you now, other states may follow. Are we really going to allow for weak laws that do not require psychiatric involvement (as far as I know, I could be wrong) and for people who are “terminal” to die earlier? It may not sound bad to you, but, what does terminal mean?

I have heard it means a condition that will kill you. I have heard it is an uncurable condition. Does this make spinal cord injuries TERMINAL? Who defines terminal? I often disagree with medical professionals assessments of the condition the disabled live in. I lived in a very dangerous environment, and many people remain blissfully unaware that a respected person is actually an abuser. Many people ignore what to me is obvious. What if a person who hates the disabled comes along and determines that terminal means you are not white, have any physical ailment including Athsma, and must be redheaded? The end of the world comes.

One arguement for Euthanasia is that people are suffering. If someone is terminal, (definition meaning six months to live) they will die. Not true. My aunt has lived with cancer for over 25 years. Before I was born she was told she would not make it to the end of the week. She is still here, she is healthier than many people I know and she IS terminal. She will die from cancer eventually.

Arguements for Euthanasia also imply that the able bodied should have the right to tell me how I feel. You may look at me and see a woman shaking from pain, in a wheelchair who must surely hate life. I feel utter peace. Often, I find my internal balance can over ride the burning pain in my body. When I gave my speech today, I felt energized, I felt alive, and I did not feel like a disabled person. I felt like ME.

Euthanasia is bad. Some people may want to die, but, should they? Euthanasia devalues life itself. Do you think you should be put to death for your challenges? Do you think that if you break your back you will want to die? You might, but, you will over come the stupidity of people who ignore your rights. Euthanasia is prevalent with animals too. We kill thousands of animals, and people protest this. It still happens but there are some against it. Let’s not risk shelters full of rejected humans being lead to the slaughter. Can anyone say Soylent Green?

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