Will I… (Trigger Warning)

 

I have been trying to hold back my level of suffering from the world. The various support groups for autism, Ehlers Danlos Syndrome, PTSD… every single one this is a reoccuring theme. I know why. Not only is being in this level of pain dangerous but it makes you vulnerable and often this is when people abandon you, attack you, or they cannot comprehend what you are trying to tell them. I do not as a rule cry when I feel so much pain but I silently sit and try to find the cause to fix it or I just learn that this is my new life. I must always be prepared for the permanence of my agony. There are people who are lucky enough that this is not the case.  I cannot stop hiding this, even when I try sometimes. There is the element of fear. If everyone knows that I can barely breathe for pain, then even the predators know. (Oh hello predators. Yes I will tazer you even when I hurt.)

This song is from rent, it is called Will I… thus the title of the post. I could die from the on going issues I have at any time. My heart could fall to pieces, a literal broken heart. I could have a heart attack from my stress and high cholesterol. I am bleeding internally somewhere, I could run out of blood. I could kill myself. That is why I am writing this post. You see, that is the whisper in the depths of what might be my soul. If I die it is over. I do not live out of some doubt about an afterlife. I do wonder but that is not a consideration in any of my choices. I do not stay alive for other people or the cats. I love many people deeply, so deeply there is an ache of joy. I guess a mental pressure sore from all the goodness. I stay alive because I want to.

I am afraid of dying and missing people. I am afraid of lingering in pain without dignity. I am terrified of being tormented by doctors as Ihave been lately. The nightmare is not the diseases or the pain. In fact some of that is better. I officially no longer am diagnosed with epilepsy but still have a seizure disorder of some sort. The some sort is not defined by science. Yet NOT having epilepsy is a miraculous thing.  It is a wonder to me.

I spend a lot of time advocating, and passionately burning for the world. Now I am just burning. The pain is in every nerve, even though some of them should not be communicating with the brain. My blood pressure is up, my heart is racing, and this is omnipresent. I have had to fight around government shut downs for my needs, but I did this. Yet all I want is to have someone hold me. Something no one can do at all. Maybe ever again. I just want to be held in a soft space of beautiful harmonics without actual sensory input. This dark space has no reality. I often find this song in the undercurrent of my psyche because it holds most of those things. Yet I do not have to wonder. No, my life will never get better. I will always have some agonizing wrong. Yes people care. I have never known how much people care, I think I do then it seems to grow. Maybe I grow. Maybe not.

I am terrified. I feel the race of time, not just because bleeding internally is very bad but I need this resolved for my mental health before november. My PTSD is at a peak height and I am not sure what I will be enduring medically but I know I will survive it if I can. Will I be allowed dignity is the true question. I am afraid to die and leave people I love, this is new to me. I never cared before. I always lived for things like spite, revenge. My revenge has been to build my life up into something I was told I could never have. I look around this space I live in and every corner has a marker of love. Every doll I own someone else gifted me, the Gothmas tree that needs its decorations and makes Sylvani happy, the pile of scarves I know will be useful and necessary that are clean, the myriad of tiny touches. My life has been a life of grief and loss. Now that I have things I want to hold on to I am afraid I cannot survive this. It is not a lack of will to live, it is a lack of trust in my doctors. I have no faith in even the best of them. Why should I with the ineptitude I have fought against for so long?

So I am left to wonder. Yes, I am in pain. No I do not know if I can survive this. I will try.

One more thing: The man who wrote Rent? He died from a condition similar to EDS called Marfan. That runs in my family too but I lack the features that mark it. That is LUCKY for me. I sometimes wonder if the pain he felt and held too close contributed to his dying, if that is why Rent hits the notes I sometimes NEED. Just a little tidbit for people who may not have known.  I do not reach for the anthems of survival that are broad and direct, they ring hollow. “I will survive” does not match my spirit. Even when that is indeed the attitude that I display as I emulate the bronco and buck for my life.

 

I am jagged glass

shattered now

pick me up

fear the cuts

I do not intend

Yet I broke

can you lift me up?

Will you laeve

I am broken

Never repaired

yet I was beautiful

I am beautiful

Shattered glass

so many sharp edges

yet it is true

I am beautiful

The Significance of Warmth

I have taken for granted the sensation of being warm in my life. It has been so rare and disconcerting. I wasn’t aware of the benefits of being warm. With poor circulation comes a constant coldness, it settles into the bones and makes it much more difficult to handle heat or cold. The temperature has to be just right or it hurts. Then there’s the blueness in my skin that I thought was natural and supposed to be there. It wasn’t a dark blue that would alert me to the issues like is always in my feet but more a lack of redness. Today I am pink and warm.

In fact in the month or so since I have gotten my wheelchair I have been warm. It started about a week after the chair was here. There are some moments where my normal chill is present but those last a few minutes, a reversal of temperature extremes. Today when I saw my doctor we discussed the warmth. Not only was my body temperature normal (98.6!) but the pinkness in my skin has actually changed my complexion in a way. I look alive, instead of like the perpetual goth girl by default. This has excited me, and I must say Sprite enjoys warm hands. She keeps jumping up into my lap to knead and purr at me so I will pet her. At least two times a day more since the warm started. It isn’t just my hands that are warmer, but my arms, the back of my neck, my legs, and even the parts of my feet that aren’t so damaged no amount of circulation could change things.

Of all of the changes in my life since the wheelchair this is the least expected and the one that has brought me the most pleasure. I don’t need the air conditioner on to keep the house cold enough so that I don’t feel like I am burning up. Every year 80 degrees has been enough to make me sweat and extremely uncomfortable. I am still extremely pale but that is the type of skin I have. Without the blueness a lot of my scars aren’t showing, though I do have some sun spots on my hands that show.

The best part of the day was the discussion of activities, because my circulation is improved she approved my idea of trying to swim at least twice a month, instead of once a month. With the water allergy I am a bit worried about a reaction but I found a heated indoor pool, and I also know that showers hurt more than baths so swimming should be okay. Especially since my pain meds have been upped. The visit with my pain clinician was interesting as well. Both doctors mentioned that there is a drastic improvement in my health that is visible.

I feel it. I also have had less seizures, though a bit more Asthma issue comes with going outside. Not only do I get to go swimming once the paratransit is set up (and that is nearly there) but I also get to go for walks, and my doctor instructed me to go out to do something once a month that is not a walk. Things like a movie if I can afford it (there is a twenty five cent movie day at a theatre weekly), the museum, or maybe the mall (okay not the mall). That is for my mental health.

I realized last night that I am enjoying being warm. Once the confusion wore off and I realized this is a good thing, I could relax a bit further. I never fully relax but my body went to sleep more easily because I allowed myself to be warm. Sprite had help keeping me asleep and warm too. We finally have a new cat in our house. Soon I will post a picture of her, but Nymph joined us on Monday afternoon. I have thirty days to decide if she can stay with us but Sprite has only hissed at her twice, once when the little scamp bit her tail and the other when I insisted they share the food bowl.

Nymph is the runt of her litter, a white calico with creamy orange spots and silvery gray streaks over the orange. She looks like she sat in a pile of ashes because her backside down her legs and her tail are all gray. She also has a headshape that reminds me of Yoda. Her eyes are a big golden color and her meow is a tiny squeaky sound. When she makes a murr to call for her family or me and Sprite if she gets lost in the apartment it is very melodic. Almost like a bird trill. She is quiet, curious, and quickly overcoming her timidness.

As you may or may not know Sprite’s full name is actually L’Fee de Esprit or the Fairy Spirit. Nymph’s full name courtesy of a friend’s children is Mystara Moon Nymph. Sprite is playing with the kitten a lot but when she gets tired she hides up on my lap, as Nymph (who is three months old) is too small to jump up here and is afraid of jumping. She has gotten over her fear of the laser pointer, so I know this is a matter of time.

Both Sprite and Nymph bring me warmth and I can finally share with them. The oddest thing about warm hands is that the way things feel is different. Not everything but small things, like the texture of my keyboard keys, Sprite’s fur feels smoother and thicker, and my hands hurt far less. They are still having their normal issues but the joints are less swollen.

This is one of the little things that I am astounded I never knew. I never realized that my circulation issues really did effect me this much, I just thought they made me cold and added to my temperature sensitivities. I wish I had known they were a sign of joint pain and sleep issues but having had a little more sleep because of being warm helped me get over my fatigue from Transport being made of Fail yesterday. (Nothing new, they just treat their consumers like luggage who has nothing better to do than wait around for them).

In a body made up of extremes, I think warmth means maybe I finally found a moment of medium. Now I have to go rescue my wallet from a curious kitten!

Loud Silence and other Oxymorons!

I am having a pain day, yet emotionally I feel fairly good. I am watching my cat’s bathe, and just found a friend’s keys. That means they have to come back. I already called them too, because of course they must be hunting for them. It makes the writing jarring at times as I like the flow on the dance of the words. I have been so busy lately, finding the means to all the scattered ends that make up a life, that I finally am having a moment of peace and solitude. It sure is noisy in my head today.

I am amused by some random things, curse words, the way that the pillows on my bed look, the sound of my neighbor’s existence being so quiet here after a year of so much noise. There is a quiet in this apartment that I have longed for and it dwarfs everything. At this moment as the sun streams through the window brightening my home, the cats too are between their moments of gleeful play. Here they play, not just a little but a lot. They wake me at times, crashing and thudding, yowling and howling, and being free. Sometimes they wake me up just so I will roll over and wrap my arms around them both using them as pillows. Even with music my house feels quiet.

The quiet won’t shatter here, though I find the adventures of life are leading me to some odd discoveries. I am going through the process of getting reassessed for more caregiver hours, I am exploring Second Life at long last, and I find that second life is actually satisfying. To me the virtual world has never really satiated the needs for communication I have, but to see the other person’s online self has given me something I was lacking. It is not a perfect match for social interaction but, it does fill in part of the void.

The Oxymorons however, abound with Second Life. There is less chat speak present than I expected, and more dysmorphia of the body. You can see people who have made their avatars look anorexic, no one that I have met so far appears to weigh as much as they really do. I am not even human in this virtual world. I donned the form of a cat, so that I can run and jump and play. It cuts down on my jealousy with Sprite and William. Some of the males suffer from a body image issue as well. They are so bulky that it is frightening to behold, their bodies twisted into caricatures of humanoid.

I know if I spent more time out of the house I would see the same body image issues, and I know too the media perpetuates a large portion of this mental disease. Our culture is ill. The more we watch movies with actresses who happen to make a broomstick look like it is obese, the more we make these movies, the more pressure our minds are under. Children suffer most especially. When I was diagnosed with Bulimia at the age of eight, it was rare and almost unheard of for someone so young to have an eating disorder. Now? Eating disorders are common at any age.

I didn’t notice until two years ago how men are also effected by the movies. They too have the unattainable body type. The people who twist themselves into these forms, perfectly thin, without figure, without health in many cases, give up their free time, the ability to go out and do things with friends, and those who use starvation or an extreme diet put their mental health at risk. Dieting can kill. You hear about it with diet pills but the restrictions and extremes that are persistent and present right now are the most shocking, cutting your stomach apart so that you can’t fit as much into your body is not going to work if you do not pay attention to how much you eat.

Now I am not saying everyone who diets doesn’t need to. Some people have eating disorders or disordered eating that effects their health. Exercise and proper diet are what matters. Proper diet doesn’t mean a spoonful of tomato soup a day. It means three squares. It means the balance you can achieve with a mixture of foods that are safe for you to eat. It means too listening to your doctor even if it means giving up food you may like.

I noticed too, by no longer watching television I no longer feel as worried about my weight. I rarely did before, but at times the old messages about my value and my body came up. The recent activities that I have dealt with made that much harder. Improper diet can trigger improper behaviors. It is harder to reign in my anger, which can be at times misplaced. I can be harder, but, when I look in the mirror I see me the way I am. I feel more beautiful today than I did when I was belly dancing. I think I may be healthier. That last sentence could be another oxymoron, or merely disguised as one.

The world we live in prizes ability, appearance, and supposed beauty over health, happiness, and the ability to live. To fit into this world in the way that they wanted I was living in a private hell, I was so tired, I was also living in pain that would never be treated because of course the pain had to be in my head. Our society is sick.

I challenge my readers today to leave the TV off for one week. You can get your news online, but at the very least try going one week without a sitcom, action or adventure. Spend some time with your books, family, or in the roaring silence of peace. Document the ways that you feel before and after, and see if there is a difference between your perceptions. How toxic can our current media system be?

Some other questions you might ask yourself?

1. How often do I see people like me (ability, race, gender, sexuality etc) represented on the news? In TV shows? Broadcast network shows? Cable shows?

2. How often do I see people like me represented as broad stereotypes (the angry guy in the wheelchair, the ugly woman in the wheelchair, the lesbian for a week, etc)?

3. How often do I see people like me represented as the villain?

4. How often do I see people like me represented as the victim?

5. How often do I see people like me as the hero?

6. How often do I see a person of a moderately healthy weight or a person who is plus sized ?

7. How often do I see a plus sized person as the lead, hero, villain etc?

There are dozens of other questions you can ask, but, the most important:

How does the lack/plethora of people like me in the media make me feel and effect the perceptions I have of myself/others?

I look forward to reading a few responses, and I think I may go and read a book.

“Happy” Anniversary (Trigger Warning)

Yes, that says “Happy”. I am not sure this anniversary will ever be happy. I chose today to teach a class. I am trying to wind my brain down from the horrors that are the sound of fireworks. I spent the entire day in my room being cranky with myself. I got over that fairly early actually and enjoyed a mental vent session by reading a site called http://www.passiveaggressivenotes.com . Eight hours later I am feeling almost normal and great for a stressful PTSD triggering day. This was the first fourth of July where I did not get sick from the smoke.

I am still feeling like the world is made of sand paper against my skin, but, I can control my snarkiness now. It’s in my head, and that has always been the case. I like to think that even Spock from Star Trek actually thought vindictive things up. “Vulcan Blood. I’ll show you McCoy!” If not, well, I am definately not a Vulcan or a Half Breed so it doesn’t matter. I am just human. That has been the theme for the week. I am just human. I am not Super Cripple, Amazing Woman, or even Functional. Just human. In preparing for the class I am to teach in nine hours, I realized I chose this day on purpose.

This is where I pause, and hide the triggering things, so you have to click a link today to get to the rest of the juicy details. Continue reading

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.

Calling all Politicians

Sometimes you have to pick up the phone and call people. I personally hate telephones. I barely can hear the people on the other end, there is this whine, and not being able to see their faces makes me nervous. What if I cannot hear them? I hate the constant what what whating. It makes me feel inept.

My Person found me a speaker phone, as our cheap little workable phone doesn’t have one, and I was not answer any calls. I just shut down the communications line and went lalalala when the phone rang. I would of course call back if someone left a voice mail, eventually. Some people are important enough to endure the evil phone for. Myself included.

This morning I decided to call my Senators and Congressman to find out what their opinions on Non dog Service animals are. I also shared my need for my cat. This is in response to Obama giving more time before the vote being cast on the DOJ’s pending ADA regulations that would ban the use of any species other than dogs as service animals. The exact regulation in question is “Title III Regulation 28 CFR Part 36: Nondiscrimination on the Basis of Disability by Public Accommodations and in Commercial Facilities.

This is the very regulation that lead to a comments threat and began my Blogging. The first call was the hardest. I dialed the long distance number to Washington, waited for the phone to ring. Instead of a ring a voice came out, “Martin Heinreich’s office.” I froze, then Toastmaster’s instinct took over. After explaining my call I was given a number that would get me faster results. Calling that, I had a conversation with a young man, who is likely older than I am, and educated him on why this law is discriminatory. He became excited, and impassioned. He told me he will fight for me and others with nondog service animals. I found this video at another  blog. The big event showing her stupidity is at 8:40. At that point you are likely to lose any respect you had for this woman.

I do admit some regulation needs to be made with in the service animal laws to protect service animal users from the Fakers such as Rosie O’Donnell destroying the little respect we service animal users get. I am lucky that most people when protesting my use of a service animal hesitate on the grounds of never seeing a cat who is well trained or can handle the duties and tasks given, but, mine is almost always on her best behavior.

All service animals have bad days. Usually Sprite gets one day off a week. Her first day out after her month of serious illness was a hard day, but, she behaved admirably. Indeed, when I started my phone calls both she and Mr.Shakespurr came and listened. Sprite, upon hearing one of the aides to the second senator protest her existence tried to hang up the phone. I barely caught her paw. I explained her, in terms they could understand. “I can’t bend or walk. I use a wheelchair. She can be an extra long arm for me, or if I drop something, I do not have to wait for someone else to get it. She returned my life and independence to me.” I think the last sentence had the biggest impact.

Six phone calls for three politicians later and I feel good. I am going to help them understand that not all dogs make good service animals and some people need alternatives. I used the phrases, “It is discrimination to vote for this bill, what about those of us with serious allergies to dogs? Should we be further handicapped by this?” Most of the workers held passion. They reflected my own zeal and none of them treated me as if I was not important.

I also called the Mayor’s office and for once found someone who was intelligent and understanding about my call. He made a promise last year to train the local police on how to handle an ADA disturbance. I am often reported to the police as if my rights are a crime, and am tired of their enforcing the negative behavior. I am no criminal, I just want to buy groceries and live a normal life. I am now waiting on the return call, there is an assigned person, responsible for this. This is progress.

The added joy, a rarity with any form of politics and telephones, either alone or together, is the joy of telling someone. “Hang on, I am talking with my Senator.” It isn’t getting to say that which causes the joy, it is the discussion that follows after the call about why I am calling a politician. Why is it important to advocate for my rights? To make my voice heard? Because, if I do not speak up, no one else will speak for me.

The Doom Ship

Not everyone gets to ride the Doomship. I ride, others ride, and yet I often take it for granted. What is the Doomship you ask? The Doomship is the Ship of Life, riding towards the birthday of Death. It sounds horribly dramatic and is.

Children born with serious illness are often told, “You won’t live to be 21,” Or something similar. I have a list of birthdays that have passed, my next is another Doom Birthday. When I broke my back, and it was first diagnosed I had a series of doctors tell me that my organs would fail by 25. My birthday isn’t for a few months, I was reading blogs off of the Disabled Blog Carnival and started reading Temporarily Disabled. Not only is this a great read, though with each post I tend to cry just a little for the child who was aching and the pain she has been through. She turned 26 and posted about the Doomship, sailing past into the great unknown.

With Doomship Birthdays past, it is like looking at a precipice of great unknown. I know I am going to live past 25. I am confident only due to surviving so long. These waters are familiar. I am pensive too, due to my Annual Cancer Scare. I get one a year. This time it is my reproductive system. I had my annual blood work done and my white count is high. My pap came back with abnormal cells. We’re redoing them both to verify before any panicking is done.

I waited three years before getting a pap, because no doctor would accommodate my need to not be in their perfect position, or to even help me balance on the table. I can’t do it myself. I need someone else to help heft my carcass around. I know if I do have cancer I won’t die. I will just get over it. My doctor is more worried than I am.

Right now I am surrounded by everything I have ever wanted. Not the things like the toys I never had, but the love I most desired. On my right I have Sprite, the service cat, curled up and purring against my back. She is helping me to not spasm so I can type the words out. My body is rebelling. I have on my left William drooling into my shirt, and every so often poking the keyboard with a paw to see what is so fascinating. He sleeps, then paws then sleeps a bit more.

In the other room my Person is puttering around, doing the dishes after making a meal of my choice. I had spaghetti with sausage meatballs. I haven’t had meatballs in a long time, but he made them for me, tolerating my lewd jokes. My home is clean, my bed is comfortable. My friends and family are far enough away and close enough at the same time. I even have high speed internet to keep me amused on those days when movement is unacceptable.

The Doomship sails on, the waves splash, the thunder crashes, and my life flashes before my eyes, but, it is the life I am living that I am proud of. Not the memories, not the past. It is my future that holds me in it’s sway. I reach for it, sitting in the prow, praying to my gods, listening to the world, and taking part in changing it.

I write something every day, and each time it is self discovery. I discovered I can write non fiction. I never knew I could. I know the mechanics of writing are sound, as I sell fiction periodically, and write it almost daily. It is merely the fear of my life that has held me back. I feared upsetting those with the power over my life and death. I am now the Captain of my Doomship. I mutinied.

So, as I rest, my ship swaying, I look out and see that everyone else is in a Doomship too, they just do not know it. They do not prepare, they do not adapt. They aren’t aware that they have to. Red sky in morning sailor take warning, the storm is coming and the night is humming… wait not for the red sky at night, for on the Doomship there is no Sailor’s Delight.

Pancakes in my Shirt

I walked out of the apartment into the rain and the car, despite being two feet from the front door seemed miles away. I burst into tears. My pain was worse than it had been in weeks. The sun was hiding and I did not want to function. After my shower earlier I realized since water makes me sick my pain might be a reaction to the chemicals in the shower. This is no comfort,but as I took another shaky step, my Person grasping me under my arms and half lifting me as I started to fall I wanted to run inside and hide in bed.

I had fought for this appointment tooth and nail, as had my doctor. I made myself move forward, clinging to the big strong arms that wrapped around me. It is cold enough that it will snow later, the sun napping as it finally acts like Winter. I curl up in the van and try to make myself eat something so that my pain pill will stay down. Two bites and I want to just die. I take the pill, I feel it slowly moving down my throat, Everything is slow today. Like molasses. I know it will be an hour before I feel any better, if the medication will work. It rarely does now.

Arriving at the hospital for my testing we find that the rain has brought out all the placard users. This hospital is very accessible, and yet we had to park in the boonies. I watch in the mirror, as I always do, for on coming traffic so that I can protect my Person. He is almost out of the van when from my blind spot, which is as big as the van anyway, a blue car speeds up nearly running him over. They would’ve hit me if I had been getting out. Pain that the rain saved me. I climb out and drag myself down the side of the van, the car blocked us in so that Person could not come to me, as was the plan. I barely fit between the cars. No apology from the rude driver, just a rude snear.

More tears. The van is six miles long, it has to be. Each tired step my legs want to give way. Why don’t they? I don’t know. I just will them to work. One more step. One more. Pull on, go forth. I barely make it to the chair, my legs giving out as I sink into the seat. Rain is pouring down, it burns like the shower. Chemicals might not be the why of the pain. It is cold, and my shelter is not up. I put the key in, nothing happens. Instead of bellowing like a Bean Sidh I take a breath, I whisper a prayer. I ask for help. We get the chair to run, it putters slowly, slowly enough that Person does not have to run. It stalls out in the door way. We aren’t there yet but the chair fails me. I sob a bit more, feeling guilt over my tears but unable to stop them.

Person hefts the chair up, five hundred pounds. Person is amazing. The chair makes it over the doorjam. A low door jam. I realize I had been being the Wicked Witch, glowering out at the world, I start humming. Dun dan duh dah dah dun dun dah dun dah dan duh… Person catches on and I let out a cackle. My pain is horrible but my mind is clearing. I must be prepared to fight. Sign in, sit down, and wait.

Waiting takes an hour, then, I have the ultrasound. Insurance won’t cover a Mammo without it. No mammogram is in the cards, says the tech. She discovers my breasts are too thick to get a clear picture. Frustration is apparent but she tries. I react to the gel. Not badly but it burns. Everything burns. Life burns today. The air burns in my chest, pain making it worse. I clean myself up and wait. No sign of anything, too much tissue. I get the mammogram.

They ask if I can stand, I try and fall. I am in my chair for the mammogram, pinched and squeezed. Denial, in my head my breasts are slightly above average. I overflow the plate. My breasts are bigger than the machine allows. It takes three to hold them in proper place to position the machine. So many pictures. An abscess bursts, have to retake a picture and clean up again. Everyone is nice, my pain receeds slowly, as the storm passes overhead. My results are given right away, after more waiting.

No sign of cancer, just scars. So many scars. My scars are clear as day, little spots and suns, but they can tell they are scars. They can match them to the flesh, and they do not look the same. I trust them. I am free of worry for at least a year. Self advocated, self preserved. Heading out again, the wicked witch is gone, but I remain. I still burn. The pain is strong, it burns my soul. I burn until the hate comes, then, I hit a bump. More tears. I smile, remembering why I am here. I won. They helped me to get what was needed.

Health is good. Still, I have pancakes in my shirt.

The Burning Question about… Hygiene

Hygiene. Every human has it, some may not know what it is but bathing, daily needs. Each person has a right to be clean, healthy and happy. My journey to self acceptance included this tidbit. I deserve to feel beautiful. Right now I feel my after shower queasiness. I feel the stabbing pain, and have a nice new burn. My cold water lost pressure, I turned it off after the shooting pain of being burned hit, the shower head thrust against the wall. My hands grasped for the proper knob, the cold should be on all the way, the heat grows, I turn off the hot water, there is just a dribble of scalding liquid now, the cold is on all the way but no one is home. I feel the rage welling up in my chest. This is my shower for who knows how long. This is my time to get clean, to feel beautiful, to wash the layer of sweat and pus and blood off of me.

Then, I realize, a child could shower and have this happen and be injured severely. I get madder, and am definately going to talk to my landlord about this. I must advocate to find out why I was burned. Not only was I burned but the burn is under my stomach roll. That area is difficult to keep dry, the HS makes it harder too because I have an outbreak. The skin is fragile. I am temperature sensitive to an extreme as well. Why do I not question that this water is scalding? I must trust myself to advocate. I must also trust my body to tell me when the pain is worse than the pain of regular water. It helps that my skin is red and tender. In life second guessing yourself is defeating yourself before anyone has a chance to try.

I burst into tears as a result of the added pain. I was already at my limit, dizzy before I turned on the water. I have to bathe today, it’s been too long and my mind was suffering. Doctors always reprimand me if I am not clean enough. My mother used to as well. She would tell me if I could smell myself then I was dirty. I always smell myself. She shamed me for playing in the dirt, she shamed me out of the shame she herself faced. It does not excuse it, but without an understanding of what happens to the body and why things are the way they are, there is less understanding.

I bathe twice a week. So far, I have felt clean most of the time. I regret the lack of beautiful hair this can sometimes cause, but, that is the biggest concequence. Why do I bathe so little? Especially when I have a disease of the flesh that causes boils? Two reasons. One, passing out in the shower is extremely dangerous. I do not have the urge to kill myself. I have learned when my pain is too much and so far I have not been wrong about the fainting thing. If I might faint in the shower, I usually come near to passing out without getting wet. Water causes me pain. I do not drink it, because it makes me sick, and putting it on my skin feels like pouring flaming acid down my body. Redundant but very painful. The other reason is that when I started bathing less, I stopped having outbreaks daily. There are times when my skin is closer to clear.

Bathing strips your skin, at least it does mine. It hurts, and often I feel beautiful even if I have not scrubbed myself that day. My skin is healthier. I do not really see a downside, except when the pain prevents me from bathing when I have sores. Sponge baths fail me, though, I am working on new ways to be clean anyway. As an advocate at times I will force myself to endure the shower knowing that either that day or the next afternoon I have to be Ultra Presentable. This is the Super Cripple thing. Super Cripple is always well manicured, bathed, and has her hair coifed. Regular person with disabilities? Not so much.

I cannot bathe without assistance from my person and my care giver. He, since they are both male, helps me in and out of the shower. Sometimes he has to do the cleaning too. Usually this comes from my sleeping late and facing my daily paralysis routine. I wake up unable to move. Sometimes I cannot breathe enough. If I have to do the force bathing, this is when I must most of the time.

I was also taught that wearing underwear makes you a good person. This is a huge paraphrasing of events, and words. I hate underwear. Panties and bras do have a purpose, but I hate them. Lets start with Bras. They have never supported or fit right. I am not sure they come in my size, and when I hit the specialty store, the little old lady always tries to sell me something, but in a few days it shreds. When I wear a bra I always have four breasts, which means it doesn’t fit. I then wind up with giant raw spots and bigger boils and abscesses during out breaks, which never end. Bras have elastic. Have you ever known elastic to not contain latex? Me either.

I do like the look of my body with a bra, but the pain of my breasts pulling on my shoulders and back is enough without stacking them into a confined space, changing the weight distribution. Last time I did that I lost another vertebrae. My breasts have caused me to develope scoliosis, my doctors theorize too that my back would not have broken if I did not have such large breasts. By now you are wondering just how big they are. Me too. I need to remeasure. Last time I measured I was a 42 inches around my underbust, and at the thickest part of my non bra wearing self, I had 56 inches. They got bigger. I do not know if they make bras that fit.

I want a corset. If I won’t wear a bra I would hate a corset right? Hardly. I used to wear them for work. One of my jobs was reenacting as a demure civil war maiden. The corset was made for my body, and I always had extra energy after work. Sure I was a bit tired but I felt so good, and my back never hurt. Corsets also work as back braces, and some insurance companies cover them. Not mine, they don’t cover a regular back brace. I am appealing this, because I have a prescription for one.

On to underwear. They too have elastic, and my skin just peels off in sheets. Have you any idea what it is like to have your pubic region inflamed? Burning and falling to pieces? Blisters all the time, worse at times when the HS was responsible, but always a blistered burning, raw pain? When I wear panties I do.

My mother used to tell me that not wearing panties would make me into a slut. Sometimes word for word. She was trying to make me safe, because girls who do not wear panties are easily attacked right? Someone might see your girly bits too. I am not mocking her concerns, but, I still don’t wear unders. I used to get to school, pop into the bathroom and take them off. I was terrified I would become a slut growing up. In High School that all changed, when, I realized that the slutty pregnant girls wore underwear. My fear of the sluttiness faded. Most of my High School class wound up pregnant before Prom. They all wore underwear. They used to talk in class about what kind they had on. Underwear is not a slut preventative or a cause.

Some underwear is better than others. Just my Size has a really great french seam over the elastic, so, I can wear them in moderation. i save the panties for short skirts. I feel less inclined with pants, than ever. Some pants are bad for no underwear, so I just don’t own them. I stick with soft fabrics, and so far I have not had yeast infections, blisters, and the like from no panties.

Humans judge one another on their Hygiene, the requirements change annually. Now the requirement is a nice powdered face, tom marrow it might be silver eye make up. The point of these confessions? My hygiene is mine. My body is mine. I am a good person, and, no matter how much I clean I cannot scrub disability or humanity away. Neither can you.

Post Traumatic Stress Disorder and Advocacy (Trigger Warning)

In conversation with one of my young friends I had a revelation. This was about thirty seconds ago. Sometimes advocating triggers flashbacks while I am trying to function. My mind lept then to other people who have to self advocate through PTSD symptoms. It isn’t always a flash back. If you do not have PTSD it might be harder for you to understand being jerked around by past trauma. Therefore I am going to explain, and this is why there is a trigger warning on this post. Sometimes reading about PTSD or other issue related things can trigger people.

This is not from the DSM (Diagnostic Manual thingy) but is from my experience. I may leave things out that apply to you or tell you things that don’t. The problem with labels is they are often not enough to truly explain what something means. Lets say someone shoots a gun. My first impulse is to be very still, not breathing, and praying that my father won’t make the shot. Even typing that sentence my head went into the land of fuzz and my chest is tight. I am taking slow breaths to focus and clear my mind. The trigger is not always a gun but just a loud pop. My brain is stuck on certain points of the abuse I suffered, it has a programmed loop that it likes to play. I have warning symptoms for my flashbacks now, and can often circumvent them.

My reality is in jeopardy from these loops. the weakest symptom is a tingle, intense fear, sometimes I start randomly bleeding. Why do I bleed? One theory a psychologist offered is somatic symptomalogy. Basically my body remembers, and it reacts so strongly to what my brain signals, that it thinks it is injured. This adds to the pain I feel. The pain from invisible injuries is far from phantom. I feel it. The next step after that is the sensation that I am floating, I disassociate and can see the entire world, but I am not connected to it. Usually I then go back in time. I see and feel at the same time, from multiple vantage points my father with his brand new gun, me and my siblings on the couch. I feel the cold metal of the gun pressing against my forehead. My nose stings with the tears I cannot shed.

The loud bang comes, I feel the heat of the bullet, my skin is burned by muzzle flash and I feel a horrible pain as the bullet grazes my temple. I don’t move. I don’t scream. I just stare up into that black hole, smoke pouring out of it and avoid looking into my father’s eyes, knowing he is going to be angry that he missed. I hear every word he screams again, how worthless I am, how I should be dead and must have moved. My sister starts to scream, my brother too but I can’t move. I look into his eyes and I see the blackness.

I still do not remember what happens next, though I have been told he decided to shoot at my sister, but I pushed her aside. I just know he tried to shoot his children, sitting on a couch that smelled like pee, and nearly killed his neighbor because the bullet went off. The cops were called but I took the blame. I said I was playing with his gun when it went off. I lied, to survive.

When I come back to myself I always want to vomit. Instead I focus on breathing. If the nausea is really bad I will take some Rolaids. Sometimes now, after years of effort, I let myself cry. Usually I manage a tear but my brain has yet to grasp the concept of tears. If I am not at home, it is worse to recover. At home I control my environment, I have a bed to curl up in, two soft fluffy cats, and my Person can go elsewhere more easily giving me the time I need to recover.

When I am advocating and flash back, I never know what to do. I try different things, and usually they work but the vulnerability can be debilitating. I flashed back my first time having to seriously advocate to that scene. That is why I chose to relate it to try and explain what PTSD is like. I wish I had simpler words but none can encapsulate just how much there is to it. Sometimes the flashes are different, sometimes I am still an adult but I am trapped, it is worse in some ways because I still feel the pain but I am completely aware that my world has vanished. I am never certain if I am going to hurt someone. I have before, but it has been a long time.

That first taste of advocacy was so bitter. The cops came, and one fondled his gun and my brain shut down. I was afraid, in pain and exhausted. I was being yelled at and deprived of my prescription because I needed my service animal. The cops even saw Sprite follow her training. When I flash she has three tasks, beyond her instinct to comfort me. First, she signals to my Person for help. Sometimes a conversation can end it. So she chirruped at the person of the day, and I had to form the words, “I need you to deal with them for me. I can’t.” Then, she helps me to sit. I had to wait fifteen minutes for a chair, I wanted to scream at them but I tried to stay calm. I was hyperventilating, they took this as my being dramatic. Then, she moves to my shoulder. Her instinct is to sit on my chest, but she might get flung there, I do not handle pressure on my chest well even when not panicking or flashing. Her instincts tell her to purr, to rub with just her face against mine. This grounds me.

The police threatened to arrest me if I did not leave the facility. I knew enough to know they couldn’t but they refused to acknowledge that I had rights. I couldn’t fight, but I had to. I chose then to repeat the law over and over. I couldn’t think, I couldn’t see their real faces for half the time. All I saw was my father and his eyes that reflected no light.

What can you do if you have PTSD and are an advocate? Here is the how to portion.

Step 1. Before you get to the point of advocating, have a support structure. This is a difficult process, because not every person can truly understand what it is to lose your reality. You need to have someone you trust availible, at least to call.

Step 2. If you have medications used to treat the symptoms of your PTSD in an emergency make sure to carry them with you, to keep a back up dose with your support person, and to keep your doctors number handy.

Step 3. Create a kit of items that help forestall your flashbacks. Nothing works for me beyond my cat. I can give her the signal she is trained for when i feel the warnings coming and ground. This is all I have right now, beyond my Person. No meds, just those two.

Step 4. Remember to breathe. Sometimes if you focus on just breathing you can help yourself.

Step 5. If you flash back during advocacy, try and focus on the responses that do not match the memory. This has worked for others, pulling them out.

Step 6. Advocate anyway. I did get the illegal policy over turned at the Pharmacy where I was threatened with arrest. I had to fight for a long time to do it, but, they relented. It is worth it even though it you might feel endangered or might BE endangered by your flashbacks.

Step 7. If you have to, stop. This opposes Step 6. Not every incident can be worked through. You might need to call your therapist, you might need to let your support person advocate for you. This is not a failing, this is merely the team network that advocacy should be.

I am glad to write this how to. I never considered how important it could be, but, in my mind my broken back, my asthma, and my failing eyes are not my most dangerous disability. The worst disability I have is PTSD. At times during flashbacks I have hurt myself, my friends, and reliving the painful memories can also cost me emotional, physical, or mental progress.

Keep in mind the time you are most fragile is just after a flash back. Some people can be triggered more easily, often it is easier to react in rage. Do not minimize your pain either. It is okay to cry, scream, and sometimes to just walk away.

I have done all of the above. Not every incident with advocating will cause a flashback either. Most of my time advocating I am left with memories of victory. My first taste of advocacy is as sweet as it is bitter, because I still succeeded, despite my unabiding terror of these men. My greatest cause was also revealed to me. I am actively fighting to get the local police trained in how to deal with enforcing the ADA. I want my rights protected, I do not want to fear being put in jail, dumped out of my wheelchair and my service animal being put into Animal Control’s care.

That was the threat, and so often is. My heart goes out to any other advocates who suffer from PTSD. I know each person’s PTSD is varied, some may not flash back, some might just panic. Others might not be able to stop their flashes. You can still advocate. Just prepare yourself as best you can.

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