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.

Showtunes

William Shakespurr is full of surprises. Until last night I haven’t had a good night’s sleep without locking him out of the bedroom and curling up with Sprite and Sprite alone. He stayed last night due to a discovery made in the morning.

I had my Person hand me my antique music box. It is shaped like a grand piano, though the lid is missing now. I wound it up, pulled the wire and a tinkling tune began to play. The Impossible Dream from Don Quixote. You will find that is a theme I listen to often, and have for most of my life.

William came running in to the room and had to investigate the sound. He was quiet, as he usually is but sniffed it. The music stopped and he looked disappointed. His ears drooped and he lowered himself to try and figure it out. I wound up the box again and set it in the same spot.

This time he put one ear against the glass where the music is created. He switched ears as the box wound down again. On the third wind he decided to lay on it, seeing if that would keep it going or claiming it. The music stopped, as the little wire that used to go up and down with the piano lid was pressed in by his body. He got up, and it started again. He did not lay on it a second time but instead put his nose to the glass staring inside. I had to give it another wind and this time he seemed frustrated.

He flipped the box on it’s side, using one paw to keep it from falling over fully and then tried to lift the box with his mouth. It was too heavy for him, so he tried to drag it. He wanted to take it away. At this time I was curious as to why other music didn’t effect him this way. The not so savage beast was tamed by … Showtunes?

Turning to the computer I pulled up a recording of the Impossible dream. He laid down and let me hide the music box in my purse, as I needed it for the day. He was just as happy. It was a sign! I currently am paying way too much for TV and therefore have access to an entire TV station for showtunes. I put that on the TV after the song on the computer was through and to the tune Hello Dolly discovered he was relaxing, calm, and content.

I left to go and watch a speech, and when I came in both he and Sprite were curled up watching the TV, though there were no moving pictures. They were hooked on the showtunes. William has changed his behavior. He was quiet enough I let him sleep with me, though normally this means I do not sleep.

He was warm, soft, and he was well behaved. Even as the night wore on I slept hard and without any interruptions. When I woke he continued to sleep too. When running out of the room suddenly, he did it for the first time without running first into the walls. Showtunes? He apparently needed to have some calming music. He seems like a different cat. Did the Broadway gods come and steal the William I know and am often annoyed at replacing him with this alien copy? That would make him a copy cat.

All I know is this, I love Showtunes and they have him behaving so well our house is now going to be filled with the standards of the stage!

Changes and Medicaid

I should be asleep, I was up at Six AM unable to sleep, my mind entrenched in researching what it will take to get Medicaid to cover a new wheelchair. I just got my scooter but my needs have already changed. This might actually be enough, despite being told by my Wheelchair Provider, “Suck it up, you have to wait five years before they will even consider another chair.” I left feeling anger at the young man, first he failed to repair my chair, then the manufacturer also failed and they gave it back to me running but barely manageable. It doesn’t turn.

How can I function with a chair that won’t go around a corner without a circus routine being thrown in to the mix? I gave up on driving indoors with the one I have a while ago. It is too bulky to fit inside. I didn’t know they should have let me drive it before I was left with the chair, or that I should have known with in a month, by some strange magical process that the chair was wrong for me.

I had an accident, before I started this blog, as well. I sat in a chair, in my own home and due to age and exposure to extreme weight for twenty or more years, it collapsed. It felt like I sat on air, even as the wood cracked like a shot gun. For me, when something frightening happens the world slows down to a snail’s pace. I could see the terror in my friend’s faces, and was glad instantly that the abusive roommate wasn’t out of her room yet.

I felt too, the pain as my body tipped into a position that it no longer could sustain. I knew I was going down. I felt this same slowness when my back broke initially, it took forever. I was actually bored by the time the car finished it’s impact and by the time the chair hit the floor, wanting the pain to come, so that it could be over.

The result of my strange slowdown is two fold. The problem is the anticipation of pain might be either smaller or larger than the actual pain. Anticipating it I may tense up, making the imapct worse. On the flip side I can also work through strategies on how to land, shift position, and protect myself. I also can go through panic by the time I hit the floor. I just hate feeling like I am in a Zack Snyder Film. My least favorite director, his trademark is Super Slow Motion Story Time.

I was lucky, I did not hit my head on the chair. I should have but when I just let myself go, my body relaxing until impact, this changed how I flowed through the air. I was impaled on a wooden stake, and immediately made a Buffy Joke, unaware that the joke was too close to reality. I barely bled. My instinct too is to slow my heart rate, to stop all unnecessary functions. this is fine enough but, also is dangerous. I am not sure where I learned it either, but it might be my Mother. She does it too.

My service cat kicked into action, running first to try and fetch any human left in the house, then, checking to see if I was still breathing, before she called for help via telephone. My Person and my PCA (Personal Care Attendant) were both called. Then I went via ambulance with the nicest and most well informed paramedics. I do not know what these emergency personnel are called in other countries but they are our first responders, along side Firemen, and the police.

They were worried, and told me so, because I was far too calm. I reminded them that panic doesn’t do anything for you and hinders care, and that my friends had panicked enough. I had spent half an hour on the floor, trying to not move. I started shaking violently, having small seizures as my body protested. Finally, my seizing was documented. It is related to my level of pain. They gave me some morphine at the hospital, just before sending me home.

First they did Xrays, nothing appeared to be wrong. It’s been a month, maybe two. I am never really sure how much time passes, a side effect of my childhood mental health care and severe traumas. I am not sure which one caused this, PTSD or too many pills. The Xray tech was a student. He was cute too, though I barely registered that. He and his supervisor had a patient who could not move into their positions for the most part, my body refused and it was unsafe until after xrays due to the existing injury.

I found something new, they accommodated my body and still got the needed film. This is rare. Usually they twist you, ignoring your screams, telling you it will just be a second. Xray time is a form of abject torture. Why? Well, there is not usually much they can do to accommodate, or they forgot how. I had a smart tech and a brilliant student. I told him too, he should stick with it and that if he wanted I would write a personal recommendation. I gave him my email address and telephone number.

I have a trained reflex to try and fix people, and this evolved into making bad jokes and never crying in the ER. I cried that night, and there was blood. I still made bad jokes but, I finally had an ER doctor that knew it was the pain talking. I had to make jokes in order to seem okay. I couldn’t stop. That was when I started trying to make myself accept that I need a therapist. Self defeat is not an option when your body is already falling apart.

You know those toys with strings in them, that when you squish them they collapse? I feel like I am one of those and someone keeps hitting that button. I often look like that when I fall too. The analogy is too close for my Person. He doesn’t mind my jokes usually but sometimes when they are cruel and anti my existence he has to remind me to be gentle with myself.

The hospital I chose was full. It rarely is, and that meant anywhere else I would’ve been worse off. I live right next door too, the Women’s Hospital. A hospital dedicated soley to the health of women! They were the first place to accommodate a need, long ago. They woke me up to being treated like a human by doctors.

As we left my doctor shared a funny story, perhaps to illustrate how unfunny any trauma was, but, it was amusing in it’s tragedy. Here it is paraphrased, beyond this point, if you are squeamish, I would skip the blue text.

You like jokes? Well, I have a sort of funny story for you. Lately we’ve been seeing a new type of meth.” So far not funny.”People are mixing laundry detergent and amonia and injecting this into their bodies. Supposedly the best high yet. We have seen a few who miss the vein.” I am busy imagining what the ammonia is doing to their brains, when my Person shudders and the doctor continues, “Each one had gangrene before coming in. I know this isn’t the funny part. Seeing their flesh cook from the inside out, but, they usually start seeing things. That’s where it gets funny. Blue bunnies, almost all of them see blue bunnies.

I took this attempt at illustrating just how funny it wasn’t to heart. When I was in the ER for my Anaphalactic Shock I did not tell a single joke. Not being able to breathe helped, but, that story echoed in my head. Most of them left before they were fully treated. It too raised the awareness of the scents behind this new Meth. I did not list all of the ingredients here either, but he did. Now, I know, if I smell really clean laundry and it smells like ammonia too, watch out!

Life is full of change. None  of it is easy, but, I follow some practices of Dharma with in Buddhism, this doesn’t make me a complete Buddhist, there are more components to my religion. It has helped me however, find some acceptance in being born into this body, in my family, and in the things I believe. Some protest Buddhims as a load of bull because there are aspects that could lead to self blame. I see it merely as another tool for coping with change. Buddhism is a life style, not, a religion.

I go back to the grindstone, trying to find resources to take to my doctor to explain my new needs. Likely I will see another wheelchair doctor, walk my few shaky steps, explain why they are fewer. I get tired of the explanations. Do they ever stop?

The Wheels on the Butt Go Round and Round…

Today is a busy day, and I hurt enough to make me want to not just crawl under a rock, but to make the rock cry to share my pain. This tactic is not healthy but it is very human, so, I must chant the mantra today that makes me feel the best. “Centered, warmth, healing light, none other shall have to face my plight. I am strong, I am beautiful, I am capable, and my bed waits for me to finish my tasks.” A little long but it helps me get going with a smile. I am eating a delicious breakfast made by my Male Person of Awesomeness, while he showers. The cats are both coming on our adventures today.

This will be our first time taking William Shakespurr out with us. Today’s activities consist of Veterinarian, Bank and the oh so fun Wheelchair Repair Trade off.  The wheels under my butt don’t want to go round and round. Since the first day I got my scooter things have been falling off. Getting it out the door to the house the first time I clipped the wall and lost a chunk of the plastic frame. The second time it was better but I clipped a rock at an SCA event (pebble sized) and lost a bit more. A rattle started a bit later and here we are Six Months into ownership of my own Personal Freedom Mobile, and it is broken.

Man of Awesome loaded it into the van and bumped an empty cardboard box, and the box won. The lights died and now half the time it won’t move. The scooter seems to be defective! What a concept right? It has had power issues the entire time I have dealt with it, but, I had no way of knowing it wasn;’t normal to have it whine, vibrate, jerk about, and rattle. The death rattle grew worse after it stalled out in the new apartment. I hit the wall goooood, and broke the plastic frame, and the entire system died for eight hours. I used the wall as a pillow, since my bed wasn’t home yet and everything else wasn;t here yet. I was the first piece of decoration in our apartment, a wall fixture I might add.

All comedy aside, this experience gave me a new light on the scooter. While it sucks horrible in many ways, those ways are made up for by the fact that I can race someone to the car, and WIN. First time in my life. I don’t have to try and brace my bosom so that they don’t smack me in the face, I don’t have to worry about a dislocated knee, I can zip right out there and not even break a sweat. I also have the freedom of leaving the house by myself for the first time in years. I don’t have to hide in my room if I want privacy and solitude, I merely have to get rolling.

The Maiden of ButtWheel Repair has warned that I might not be able to get this particular chair back, and that I might want to look at other designs. What I truly want is just a wheelchair shaped item, no long nose, just a nice, cushy chair. I would need to add on a few particulars, like a basket for the cat to sit in, and my sunshade, but, after that? I could maybe make it around some of the walls in the apartment, or maybe squish into that store that is barely inaccessible. Scooters add to the inaccessibility issue facing stores and their handicapped customers, though they are great for some people.

I already miss my wheels…

Handicapped Access Fail

I love the fail blog, I really do. Still in reading the back log left from a weak net connection for three months I found this. That’s right. Handicapped fail. I waited for the picture to load with anguish, fearing it was mocking someone in a wheelchair. Instead, Fail Blog has some win. They showed an accessibility issue, with a twist of humor, but called the lack of access fail. Anyone who has ever used a wheelchair knows how big that fail is. I have cried over such fail.

So, Failblog, thank you! You are win!

Now I am going back to reading it, I love me some Schadenfraude 😉

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