So, it seems my 'invisible' illness has quickly become a highly visible illness.
I always told people I wished I turned purple when I became ill and developed green spots during a flare. Now, I'm not that visible (though I still wish those things), but I am now sporting a pair of forearm crutches.
The physio I saw Thursday evening put me on them and told me to consider a short-term aid for a long-term problem. I hope to be down to one stick in time for Xmas shopping, but for now, two sticks is a tricky transition.
She also used a portable ultrasound machine to attack the inflammation in my hip. I don't think it did much at the time, but it was feeling mildly better on Friday morning. And then I undid it all.
I took a pretty hard fall on Friday night.
Transitions all around.
Showing posts with label Pain. Show all posts
Showing posts with label Pain. Show all posts
Sunday, October 23, 2011
Wednesday, October 19, 2011
I was just looking on Google for "normal xray ongoing hip pain" and came across an article on women with ankylosing spondylitis. lots of women with as have breast tissue pain and costochondritis. if I ever get to see my rheum again im going to ask for the gene test. my mother has always had bad sciatica pain, so thats a familial tick.
its treated with methotrexate and enbrel. I guess I need to start fundraising for my 25k a year treatment.
its treated with methotrexate and enbrel. I guess I need to start fundraising for my 25k a year treatment.
Combustion
For a brief time in my life, I studied chemistry at university. I'm good it, albeit don't really 'get' it. And for a while, we studied combustion. Combustion is treated as this miraculous event, and obviously it was. I mean, suddenly something was powered of it's own accord and you could fuel the engine and keep it going.
I like to think of the anger inside me as that powerful agent of combustion.
My child is excessively clingy, my husband is grumpier than hell and I hurt.
My doctor is overseas for a while. Apparently he wrote a letter confirming there is nothing physically apparent on the xray. Everything in my hips screams. I can't rotate it. I can't move it. I can't walk. I can't climb. I can't eat or sleep. It hurts.
SOMETHING is wrong.
He copied my Rheum on the xray and I suspect the letter. He didn't mention to me he was going overseas.
I have spent the morning on the phone. Trying to convince the GP's office to refer me to the hospital but they keep telling me it's against practice for another GP to take over a patient.
I have called the Rheum's office and keep getting put onto answer phones.
I've called various physio offices practically begging to take me on. Tomorrow at 3pm. Do they have any experience in mixed connective tissue disorders? Ummm...No.
Next!!
Things are chaotic here. Soph is so bored. She's becoming destructive.
I can only play Barbie for so many hours before I want to scream.
Matt is grumpy and cross. With me. With life.
People want to know what it's really like living with an ongoing illness? With chronic pain?
It's hard. It's not fun. It's horrible. It's rejection. It's being a blip on the radar of anyone who gives a damn.
Fights between one another. Kids who feel pushed to the back burner.
It feels like this volatile gas is building up under pressure. All it take is that magic of combustion before it explodes all over the place in excess.
There are days when you wish you didn't have to get up. That would be today. But I have to. There is no one else.
And there is tremendous pressure to be THAT mother. The one who can push through it all. With a smile.
I did laundry, cleaned and made brownies yesterday while battling a headache from the Tramadol and downing anti-naus meds.
I really wish there were days when you won medals. When someone brought you dinner. When they offered to vacuum. I want the gold star and the accolades for pushing through this pain.
I just don't want the damn thing to blow up into a billion messy pieces. I'm trying to prevent that combustion.
Today is so hard.
I like to think of the anger inside me as that powerful agent of combustion.
My child is excessively clingy, my husband is grumpier than hell and I hurt.
My doctor is overseas for a while. Apparently he wrote a letter confirming there is nothing physically apparent on the xray. Everything in my hips screams. I can't rotate it. I can't move it. I can't walk. I can't climb. I can't eat or sleep. It hurts.
SOMETHING is wrong.
He copied my Rheum on the xray and I suspect the letter. He didn't mention to me he was going overseas.
I have spent the morning on the phone. Trying to convince the GP's office to refer me to the hospital but they keep telling me it's against practice for another GP to take over a patient.
I have called the Rheum's office and keep getting put onto answer phones.
I've called various physio offices practically begging to take me on. Tomorrow at 3pm. Do they have any experience in mixed connective tissue disorders? Ummm...No.
Next!!
Things are chaotic here. Soph is so bored. She's becoming destructive.
I can only play Barbie for so many hours before I want to scream.
Matt is grumpy and cross. With me. With life.
People want to know what it's really like living with an ongoing illness? With chronic pain?
It's hard. It's not fun. It's horrible. It's rejection. It's being a blip on the radar of anyone who gives a damn.
Fights between one another. Kids who feel pushed to the back burner.
It feels like this volatile gas is building up under pressure. All it take is that magic of combustion before it explodes all over the place in excess.
There are days when you wish you didn't have to get up. That would be today. But I have to. There is no one else.
And there is tremendous pressure to be THAT mother. The one who can push through it all. With a smile.
I did laundry, cleaned and made brownies yesterday while battling a headache from the Tramadol and downing anti-naus meds.
I really wish there were days when you won medals. When someone brought you dinner. When they offered to vacuum. I want the gold star and the accolades for pushing through this pain.
I just don't want the damn thing to blow up into a billion messy pieces. I'm trying to prevent that combustion.
Today is so hard.
Sunday, October 16, 2011
The Invisibles, a new film by Pixar & Disney
Idea Pitching
A young woman walking with a crutch approaches a heavy-set cigar smoking man at an outdoor cafe setting. The street is busy but the fenced off al freco dining allows her to approach him. His tie costs more than her food budget, but not quite as much as her doctor bills for this month. He's busy thumbing through scripts, chasing each rejected pile of papers with a thrown back sip of scotch, easy, over ice.
She hands him her soon to be discarded pile of paper, the title page reads: The Invisibles.
Unlike The Incredibles, there are no masks or capes or stretchy, lycra suits (now dry-cleanable). But the powers are similar. The hidden identities are similar. Working crappy jobs to get by? Similar again. Mothers, fathers, brothers, sisters, babies. It's all there. But there are no headline winning accolades for The Invisibles.
"The Invisibles" are people with Hidden, Silent or Invisible Autoimmune Diseases who do not necessarily look like they have a disability, so they choose to hide their disease. They work as hard, if not harder, than the average healthy person, but their lives are riddled with pain, rejection, uncertainty and the blase attitude aimed at them.
Most people couldn't match a face to an illness, because there is no face for most autoimmune illnesses. The woman with the crutch has MS. But to other people, she's just that lady with the stick. Did she fall and have an accident? Was she drunk? Stupid, careless woman costing us all money. If only she'd...
So, What Makes it an 'Invisible' Illness? Aren't you just being a bit dramatic here?
"According to The Invisible Disabilities Advocate, an organization dedicated to raising awareness of invisible chronic illnesses and disabilities, more than 125 million Americans have at least one chronic condition, and for more than 40 million, their illnesses limit daily activities...The term invisible illness refers to any medical condition that is not outwardly visible to others, even healthcare professionals. Invisible illnesses encompass a broad range of conditions, including heart disease, diabetes, dementia, psychiatric illness, autoimmune disorders, and even cancer." source
Out of those 40 million sick Americans, "only 7 million use a cane, walker, or wheelchair, making their disabilities visible."
40 million Americans seems like a seriously big number. Can that even be true?
"According to the Centers for Disease Control and Prevention, nearly one in two Americans suffers from at least one chronic disease that affects their daily lives. Diseases such as fibromyalgia, arthritis, and diabetes are often referred to as invisible illnesses because the pain many patients feel is not visually apparent." source
Even scarier, "taken together, autoimmune diseases strike women three times more than men. Some diseases have an even higher incidence in women. In fact, of the 50 million Americans living with autoimmunity, 30 million people are women, some estimates say." source
"While individuals with visible illnesses—those requiring canes or wheelchairs or causing physical manifestations (e.g., hair lost from chemotherapy, tremors and speech irregularities from Parkinson’s disease)—do encounter sociocultural difficulties, their obvious medical conditions typically engender ready support and understanding from others. However, for those with invisible illnesses, such support may not be as forthcoming. And for those with invisible illnesses that remain controversial in the medical community and public eye, support may not come at all." source
What's So Invisible About This Illness?
"Debilitating joint and muscle pain, fatigue, migraines, and other chronic “invisible” symptoms frequently characterize autoimmune and autoimmune-related disorders, such as lupus, rheumatoid arthritis, fibromyalgia (FM), and chronic fatigue syndrome (CFS), which is also called myalgic encephalopathy/encephalomyelitis or chronic fatigue and immune dysfunction syndrome (CFIDS). Although all individuals with autoimmune disorders usually encounter skepticism about their invisible symptoms from others, conditions such as lupus or rheumatoid arthritis are well-established—albeit sometimes difficult—medical diagnoses, and the general public is aware of them as such.
However, individuals with FM or CFS are not so fortunate. 'Not all chronic diseases are equal. Some are more accepted than others,' says Patricia A. Fennell, MSW, LCSW-R, the CEO of Albany Health Management Associates, Inc. 'There are more than 80 autoimmune diseases, and many can be considered invisible,' she says." source
Because autoimmune illnesses seem to be a shared general affliction with women of childbearing years, one could ask if the overall submission of women in previous generations has had anything to do with the tremendous fight for acceptance and treatment for these various autoimmune conditions. "The fact that women have enhanced immune systems compared to men increases women's resistance to many types of infection, but also makes them more susceptible to autoimmune diseases."
Since caregivers and the giving of care has been a female societal role, it makes sense for women to have helped one another through illness without any major media attention via publications or television. It was simply seen as a rite of passage, the role of young woman into caregiver. With more and more caregivers being struck with illness though, and with more attention and equality in medical treatment, more women are actively seeking medical assistance. source
"Even though there is some universally accepted knowledge about autoimmunity, its victims -- mainly women -- have suffered from a lack of focus and a scattered research approach. For example, autoimmunity is known to have a genetic component and tends to cluster in families as different autoimmune diseases. In some families, a mother may have lupus; her son, juvenile diabetes; her sister, antiphospholipid syndrome; and her grandmother, rheumatoid arthritis." source Is the fight for acceptance, treatment and a cure a feminist issue?
Real Life Voice: "As I have metal in my back and am in pain with this I sometimes use a stick, the interesting thing is people are more than happy to let me pass or give there seat up for me. When I don’t have a stick you can forget any help."
The Boogie Monster, or The Evil Genius Behind Illness
"More than 50 million people in the United States suffer from autoimmune diseases due to an abnormal immune reaction called autoimmunity. Autoimmunity is a major cause of many chronic diseases. This number, however, does not include several brain diseases and mental illnesses for which brain autoimmunity has been experimentally demonstrated. For example, a huge population with autism spectrum disorders (ASD), Alzheimer’s disease (AD), Tourette’s syndrome (TS) and obsessive-compulsive disorder (OCD) has been found to have autoimmunity to brain. This patient population is never included in epidemiological studies of the autoimmune diseases." source
People often ask, "Oh, what caused your illness?" and it's a very good question. It's such a good question there are few answers for it. Luck? Genetics? Bad luck? Bad genetics?
When you pose an even heavier question like What Causes Chronic Illness?, you're opening a Pandora's box of opinion, and not many eliciting these opinions are actually getting anywhere near to evolving a solution to the problem.
"Research of autoimmune diseases has not revealed the mechanisms that cause this response. According to A.D.A.M, one theory holds that various microorganisms and drugs somehow "triggers" off the immune response, particularly in those with a genetic predisposition to an autoimmune disease.
Someone can experience more than one autoimmune disease at the same time." source
Google estimates there are about 5,130,000 results for the question. And, in contrast to the myriad of hypothesis to answer the question of the cause of chronic illness, there are only a few path to diagnosis.
Are We There Yet?
One of the most frustrating and emotional aspects of chronic illness is the diagnosis, or the lack of a diagnosis. I know for me personally, it took years and every time I saw someone and paid for the expertise and walked away with nothing was a massive blow.
"Getting a proper diagnosis is sometimes as difficult as living with the disease itself. Victims face problems not only because physicians often don't think of autoimmunity, but also because of who they are, namely, women in the childbearing years. As a rule, this is a time in a woman's life when she looks healthy, though looks can be deceiving. Often, women who suffer from autoimmune diseases are not taken seriously when they first begin consulting their doctors. A woman's symptoms are likely to be vague in the beginning, with a tendency to come and go, and hard to describe accurately to her physician. In a typical scenario, she is often shunted from specialist to specialist and forced to undergo a battery of tests and procedures before a correct diagnosis is made, which can sometimes take years.
According to a 2001 survey by the Autoimmune Diseases Association, over 45 percent of patients with autoimmune diseases have been labeled chronic complainers in the earliest stages of their illness. This can be devastating to a young woman who may then begin to question her sanity as she tries desperately to find out what is wrong. Tragically, many of these patients suffer significant damage to their organs in the meantime and end up carrying this health burden with them for the rest of their lives because of the delay in diagnosis.
If the public, particularly women, and medical practitioners were more aware of the genetic predisposition to develop autoimmune disease, clearly there would be more emphasis on taking a medical history regarding autoimmune diseases within the family when presented by a patient with confusing symptoms. Earlier screening of these diseases could not only prevent significant and lifelong health problems but also actually prevent some autoimmune diseases." source
The Skeptics
Often, simply informing others about a medical condition is not enough explanation. "There are substantial differences in how individuals are viewed culturally and socially, depending on their diagnoses. Diabetes, lupus, heart disease, and cancer may all be considered invisible illnesses, but “no one would ever consider questioning the limitations of an individual who says [he or she has] one of these diseases,” notes Fennell. Yet, this happens frequently for those diagnosed with FM and CFS, she says. According to The CFIDS Association of America, the condition’s name trivializes the illness as little more than tiredness, even though the illness is associated with a “constellation of debilitating symptoms.”
I don't think people mean to be hurtful or ignorant about medical conditions, especially long-term painful ones. I think they just assume there's an answer to the question.
Take 2 of these and call me in the morning, went the saying. An aspirin a day keeps the doctor away. Lots of older people have mantras to health. In my day we smoked and drank and nobody got cancer.
Well, we know that's not true. You just didn't know you had cancer.
And it's the same for chronic illnesses. You didn't know you had it. You had it, and empirically we can look back and diagnose people with illnesses, it's just that you didn't know you had it. So you weren't expecting anything more than what was thrown at you.
Today, we can tell how many micrograms of iron you're lacking with a simple test done in 15 minutes.
Another helpful source of contention for our skeptics are the number of doctors and health related shows on tv. Someone is always handing out an answer and there's always a nifty little ending, endearing and heart-warming, all wrapped up in a 42 minute episode. If Dr. House can cure FMF, surely ANYONE can now that we've watched it on tv!!
When the FMF episode aired, I received a lot of emails and a few phone calls from overseas. Oh, they'd announce, almost ecstatic, there's this drug called COLCHICINE! And it cured them!!
And I'd have to break it to them that well, yeah, colchicine is effective in a lot of symptoms, but mostly it helps with the kidneys and doesn't do a lot else. And there's no cure. It's a lifetime sentence. Oh, and it makes you poo a lot.
So, when someone hears that you've got some chest pains and ongoing inflammation in your joints, they think back to an episode of The Doctors in which we were all told how fish oil helps to STOP inflammation. Or Dr. Oz told us that arthritis really only affects those 65 and over. And, if you're lucky, someone will hand you some colchicine because it helps cure diseases.
It doesn't forgive them for the stupid things they say, but they truly don't mean it. They're suffering from a bad case of Misinformation. Unless they have hearts of concrete, which a lot of them do, and they do honestly delight in younger people than themselves being sick, miserable and almost dying. I like to call them ogres, or trolls depending on the day.
Deborah Barrett, PhD, MSW, agrees: “For many invisible illnesses, there has been more understanding, attention, and validation from the medical community...in terms of public awareness and acceptance." source
Skeptics also seem to take issue when a sick patient rejoices in a diagnosis. See, she's managed to make herself sick enough to trick a doctor. She just wanted the attention. How can you be HAPPY to be so sick?
Dr. Elvira Aletta responds: "There may be a difference in how we respond to a diagnosis if the onset of the illness is sudden as opposed to insidiously appearing over months, if not years. It is common to hear from people who have lived with painful symptoms without a diagnosis to actually feel celebratory when they are finally given one. It would be understandable if that were not the reaction of someone who suddenly, 'out of the blue', discovers they have serious heart disease or cancer." source
How Did You Get So Sick? or What Did You Do to Deserve This?
In my time as a chronically sick person, I've run into people who have posed some interesting questions. One of my least favourite experiences in life was meeting with a woman who, when finding out my twin loss was *only* a first trimester loss, she proceeded to rip me a new arsehole. Because a real loss is after 22 weeks. And, she finished, aren't I lucky I don't have cancer.
Now, this particular day sticks in my head because it was one of the first full outings I did to get veggies and fruit from a local farmer's market. I had been preparing myself by doing 10 minute walks 3 times a day to gain the endurance to do this Farmer's Market trip.
And she cornered me in front of the chicken man, who sold farm fresh eggs and chicken. Hence the name, Chicken Man.
He looked embarrassed, ashamed that this woman was yelling at me for having the GALL to feel sadness around my twin loss and for telling people I was sick. After all, I could have cancer, you know, a REAL sickness.
We were at the farmer's market with friends and their baby boy, and when I sat down and told them what had happened, no one moved. I desperately wanted someone to go up to her and tell her to fuck off and die, but no one did. Instead, they all just murmured about illness and people not understanding.
That moment proved to me that there are people who *get* pregnancy loss and chronic illness and there are people who really don't deserve more than the shit on their shoes.
And since that moment, I really have very little time for people peddling me crap ideas.
I once had a woman selling Ganoderma mushroom paste ask me if I believed I made myself sick.
And I told her honestly, No. No I don't believe I made myself sick. Now, I'll be the first to tell you I'm not an optimist. I'm a realist. A pessimist in a nice, nifty new coat.
I had a bad upbringing. I suffered through miscarriage and infertility. There was a period where I didn't conceive for a year and a bit, followed by a string of miscarriages. I had a bad birth. And I lost more babies. I got sick. I'm still sick.
Nope, not much to feel joyous about, but I wouldn't relegate myself to the 'causes illness to happen' thinking. Personally, I think that's a bunch of garbage created to sell products and prey on people's fear, insecurity and sadness.
Yes, we've all met that person who is so negative despite all the good in their lives. And conversely, we've met the person who is so happy despite all the shit that rains.
Even more so, we've all met that person who said, oh, I can't do it and they didn't. Or prayed for help and they did do it, well.
Yes, there is a mental aspect of it. We are living, breathing organisms that are complex. Our brain is as much tied into our physicality as it is our mental thoughts and our emotional feelings.
If you're having a bad day, you're probably going to feel more sore, or anxious or helpless. Just as, if you're having a good day, you tend to sort of 'forget' a few of those niggles.
However, you didn't CAUSE this disease. You didn't bring it on yourself by having a Big Mac every Friday for a month. You didn't wish for a lifetime of pain and hardship by hoping that horrible bitch at work got a flat tire.
While we are beings in the infantismal flow of life, let's face it, we're not that powerful. Really, we're just some mould that got lucky in the evolution stakes and we managed to learn behaviours that enabled us to grow, mate and evolve.
To say that I am so powerful as to genetically alter my DNA for bad purposes is to say that I may as well go outside and end the droughts in Africa.
I believe there is a lot to the physiological malfunction of the body and the connection to poor physical form. That's why massage feels so good and how a chiropractor can relieve a headache or a backache. I think we have moved a lot from our natural, normal positioning by sitting and reclining. You can learn a lot by reading about proper physical functioning on some really good blogs. Investing in taking care of your body can relieve lots of pain, but it can become a long-term costly facet of care.
However, all that mental blaming is detrimental and whether you are or are not at the root of your own illness has very little to do with autoimmune disease and autoimmune arthritis or chronic muscle burning. There are a lot of people out there peddling products and services to help you overcome the problems you've caused yourself, or so they say.
Yes, let's be forthright with it. We're sick and we've all had a bad day or so. Maybe it's made it worse and maybe it hasn't. But, it does not give anyone a right to prey on someone's fears and insecurities. And it gives NO ONE the right to blame you for being sick.
Coping mentally and emotionally is going to be one of the best ways for you to have better physical days. Having better physical days is going to be one of the best ways for you have better mental and emotional days. It's a circle. It can't be broken off or segmented away. There is no room for BLAME in healing.
Coping With Chronic Illness by Dr. JoAnn LeMaistre is a very important article to read.
This is a fantastic article by by Mark Grant, MA.
Don't You Have a Doctor for That?
The best system of care is in which the patient feels understood. If the patient has pain, but has a doctor who acknowledges the pain, who sympathises, the patient goes away with a better feeling and understanding of the pain, the limitation in 'curing' or stopping the pain and an overall better prognosis.
The doctor-patient relationship is as important as a husband-wife relationship in the long-term care of a patient. That's why if your doctor is crap, you dismiss him/her and you seek someone else. In a system in which this model of care, turning to your GP for every path of guidance, is the rule, finding a good doctor is almost as difficult as finding ancient coins washed into the sand at the beach.
For me, in order to see a specialist, I must get a referral. And my referral is to either a public doctor or a private doctor. Because I have insurance, I often go private. Well, actually, to tell the truth, I've never gone public. For anything, other than birth. And that didn't go so well.
My relationship with my GP is paramount in regards to my care. This is a doctor who sees more files on me than I actually wish, but knows the ins and outs of my health almost as much as I do. It's taken years to find someone I trust so much. However, I wish it wasn't so doctor centric. I wish the health care model allowed me to nominate a physiotherapist as part of my initial response team, so as to get the quality recovery and joint protect I need.
In addition to the doctor-patient care model, there should always be the so-called "fringe treatments" that make up the core of your care: Physical care, Mental Care, Emotional Care. Music, craft, friends, family, photography, sewing, animals, stretching, yoga, sleep, vitamins, minerals, talk therapy. You need to combine the allopathic with the natural, with the alternative, with anything that matters a lot to you.
There are ways to ensure you have a better health picture overall, despite your constellation of symptoms, no matter how maddening.
If you can openly grieve, name your anger, vent in a safe and finite way, actively and physically challenge yourself and emotionally support yourself, you will feel better. And that involves a lot of people. Talk therapists, a physio, group supports, social activities, friends, family, pets.
It's almost too exhausting to try and create a better health for myself.
It's All in Your Head.
I usually laugh when someone suggests my illness is all in my head. I don't hear much of it now, but I did. And I heard it even more from doctors, so called 'specialists' about my daughter. Now, I even find myself laughing when I hear someone lament that a doctor told them that it was 'all in your head'.
We must remember that people thought women were hysterical monsters, fit for nothing more than the sanitarium, during their periods. This hierarchical stigma of the male diagnostics of women is centuries old. And, when your symptoms don't fit their nice, neat tucked away manual, well, you're nothing more than that hysterical woman in need of a straight jacket and to be tucked away, nice and neat, away from causing them concern.
But, we do need to accept that there ARE mental symptoms in conjunction with physical symptoms. Of course there are! We are living, breathing organisms. We cannot simply turn off the brain in regards to physical symptoms, in as much as we cannot turn off our emotions when we feel pain.
Depression, and let's just clear the water, is commonly found as a co-morbid symptom of any ongoing illness. How can it not be? People become depressed over once in a lifetime changes. This is an ongoing, chronic, every day for the rest of your life issue. It's OK to say you have been or you are depressed in conjunction with your illness.
"Dr. Elvira Aletta suggests that one or a combination of the following factors can affect the emotional and psychological well being of those diagnosed with a chronic illness, and contribute to depression.
The situation. Loss. Grief.
Changes in appearance, mobility, independence.
The illness itself may have depression as a symptom.
Pain and fatigue.
Side effects of medication and other treatments.
Social pressure to appear okay especially hard if there’s no diagnosis." source
The role of denial cannot be ignored either. When you spend your entire day pretending there is nothing wrong, despite there actually being something hugely wrong, the mental, emotional and physical toll is exhausting.
There are a lot of treatments out there that can attempt to curb both the mental distress as well as reduce some of the physical symptoms of ongoing illness. I know quite a few people who use antidepressants for muscle control as well as anxiety or depression. Lots of people have had success getting outside and back into society, despite their illness, once they've successfully mastered antidepressants.
It's probably the most personal facet of your care and it's ok to ask for help.
Real Life Voice: "I try to pretend this hasn’t happened. My attempts to restore equilibrium lead me to think some moments or even hours that I do not have this disease. I pretend. My family pretends. Then I seem to have to start all over with my family, my friends, my life, again experiencing the shock, the uncertainty, the disruption, the striving and the acceptance."
The Silence
While numerous and highly visible campaigns have worked hard to educate the public about the plight of those with invisible illnesses, there will always be a hesitancy about it all.
If you know I'm sick, will you still treat me like you did before you knew?
_____Will our friendship change?
_________Will you want to date me?
____________Or will you think less of me?
_______________Will I become an inevitable burden to you?
That feeling of being a burden, to you, to life, to society, to my family, to my friends, to my children, to future generations is what keeps me, and countless others, quiet. If I complain, will you think I am not grateful for the help I receive?
If I complain, will you tell me all the things I *should* be grateful for? Will you decide not to help me for fear I might complain about needing help?
If I am quiet, and don't complain, and then you tell me I should have said something, who is helping whom?
It's profoundly complicated.
There was a very black time in my journey when I didn't want to get out of bed. I couldn't. It hurt. I couldn't eat. The medication was making me sick. I hated freely and I didn't care who I hurt. All I wanted was the permission to die. I had broken it down into 2 reasons. One, I didn't want to live if living hurt so much and because I felt like such a burden.
I hadn't dreamed that I'd get married and have children and become a huge, physical, mental, financial burden to them. That wasn't what I signed up for. That certainly isn't what they signed up for. And the cost was escalating out of control. There was no help available.
As a society, we are raised to become self-sufficient. I was told it was the goal of a good parent: To create a self-sufficient 18 year old who could go out and fend for himself.
Some societies and governments work to provide for those less sufficient. I'm lucky to live in one such society where the bulk of my medical care is provided by the taxpayer. And I hope it's something that catches on globally. But there is a great and paradoxical disgust of people using these services.
"None of us struggling with chronic illnesses want to appear visibly disabled to our friends, family or co-workers (or for that matter to total strangers). So, we learn to adapt and become adept at fooling onlookers, along with keeping helping hands at arm's length. Its a hollow victory though.
Sooner or later we all need a helping hand even if we are reluctant to admit it. It is not always easy relying on the kindness of others." -- source
Real Life Voice: "My Social Security Disability application was approved. I’ve been told that only 30% of first-time requests are granted disability payments. I’m obviously relieved and grateful to qualify for social security. My initial reaction to all this news was something like … “Great, I’m approved for disability!”; followed by … “Crap, I’m approved for disability!”
Give Me a Call if You Need Anything
If you are wanting to help a friend or family member with aspects of their ongoing illness, I ask that you read this open letter so that you can understand some aspects of living with an ongoing illness.
“Friendship is born at that moment when one person says to another: "What! You too? I thought I was the only one.”
― C.S. Lewis
One of the things that heals the wounds is time. And what makes time so worthwhile are the people we spend it with. I feel so tremendously grateful for the friends I have had, over time, and hope to keep. It doesn't mean they've always done or said the right things, but they care.
When a woman loses a pregnancy, a baby or an infant, one of the things we like to educate people to say is very simple. I'm sorry. I'm sorry for your loss.
And, if you don't know what to say, you simply say: I don't know what to say right now, but I am so sorry for your loss.
And it's the same with most loss. You verbalising that I have had a loss is what is most important. You accepting my loss with me. I know you don't understand it fully. But I know you care.
We have a habit of wanting to quickly rush in and fix it all. Smooth it all over. Remove the pain. Curb the inconsistencies. Flush out all that is wrong with the world today. And you can't do that with chronic illness.
I will still be sick tomorrow. My house will still be a mess. My bills won't be paid. I won't have extra funds. My yard will look like a primitive jungle and to be honest, I don't have the time, the energy or the consideration to really care. It bothers me, oh it gets under my skin like you wouldn't believe, but I want to spend my time and my energy and my consideration on what is important to me.
Once, when I was part of an early childhood setting, a mother had an unsettled baby. I offered to come over after lunch and play with her older child or the baby while she slept. She scoffed very loudly: You?! Of all people, you!!
I think that did more to ruin bits of me than anything else at the time. I had been working so hard to have energy and stamina and it would mean a lot TO me to help. It also would have meant my daughter would have had a playmate for the afternoon and I would get to hold a baby, something my heart yearns for.
But no. All she could see if that this sick woman was offering to help. How bad a situation must she be in for a SICK woman to offer to help. At that moment I wasn't actually a human being. I was a subject of her pity. No, no, no. She wasn't going to be having a SICK person helping her, she wasn't that desperate! I was the desperate one, what with being sick and all.
What she didn't know is that I'm quite good at settling unsettled babies, as I've had one myself. And that it would have done us both a world of good.
I'm not saying to let disabled people come into your life just because you feel bad for them, but don't write someone off just because they physically aren't perfect. I'm still a mother. I'm still an academic.
Don't be put off when I tell you about my illness. I'm letting you know, ahead of time, for what's going to happen to me. It, however, doesn't lessen WHO I am.
So, to help me, is to let me back into life. Don't try and protect me from failing. I already know I'm not going to be perfect or that I'm going to flounder. But so do other people. Let me back into life.
* Rest Ministries has an excellent article on things TO say and things NOT to say. They also have a great article on how to help your friend or loved one.
* 50 ways to help a chronically ill friend
* Reach Out Australia has some good ideas too.
Seriously, the two best websites on Chronic Illness are But You Don't Look Sick and the Invisible Illness Awareness Week blog.
Your Illness Is Not Your Fault by Tamara Staples here
Five Simple Words to Keep Chronic Illness at Bay by Madeleine Parishhere
For more information, and support, like the Invisible Illness Awareness Week Facebook Page.
5 Rules for Living Well with a Chronic Illness -- source
A young woman walking with a crutch approaches a heavy-set cigar smoking man at an outdoor cafe setting. The street is busy but the fenced off al freco dining allows her to approach him. His tie costs more than her food budget, but not quite as much as her doctor bills for this month. He's busy thumbing through scripts, chasing each rejected pile of papers with a thrown back sip of scotch, easy, over ice.
She hands him her soon to be discarded pile of paper, the title page reads: The Invisibles.
Unlike The Incredibles, there are no masks or capes or stretchy, lycra suits (now dry-cleanable). But the powers are similar. The hidden identities are similar. Working crappy jobs to get by? Similar again. Mothers, fathers, brothers, sisters, babies. It's all there. But there are no headline winning accolades for The Invisibles.
"The Invisibles" are people with Hidden, Silent or Invisible Autoimmune Diseases who do not necessarily look like they have a disability, so they choose to hide their disease. They work as hard, if not harder, than the average healthy person, but their lives are riddled with pain, rejection, uncertainty and the blase attitude aimed at them.
Most people couldn't match a face to an illness, because there is no face for most autoimmune illnesses. The woman with the crutch has MS. But to other people, she's just that lady with the stick. Did she fall and have an accident? Was she drunk? Stupid, careless woman costing us all money. If only she'd...
Helen: Now it's perfectly normal...
Violet: [interrupting] Normal? What do *you* know about normal? What does *anyone* in *this* family know about normal?
Helen: Now wait a minute, young lady...
Violet: We act normal, mom! I want to *be* normal! The only normal one is Jack-Jack, and he's not even toilet trained!
[Jack-Jack bursts out laughing]
Dash: Lucky...
[Violet and Helen look askance at him]
Dash: Uh, I meant about being normal.
So, What Makes it an 'Invisible' Illness? Aren't you just being a bit dramatic here?
"According to The Invisible Disabilities Advocate, an organization dedicated to raising awareness of invisible chronic illnesses and disabilities, more than 125 million Americans have at least one chronic condition, and for more than 40 million, their illnesses limit daily activities...The term invisible illness refers to any medical condition that is not outwardly visible to others, even healthcare professionals. Invisible illnesses encompass a broad range of conditions, including heart disease, diabetes, dementia, psychiatric illness, autoimmune disorders, and even cancer." source
Out of those 40 million sick Americans, "only 7 million use a cane, walker, or wheelchair, making their disabilities visible."
40 million Americans seems like a seriously big number. Can that even be true?
"According to the Centers for Disease Control and Prevention, nearly one in two Americans suffers from at least one chronic disease that affects their daily lives. Diseases such as fibromyalgia, arthritis, and diabetes are often referred to as invisible illnesses because the pain many patients feel is not visually apparent." source
Even scarier, "taken together, autoimmune diseases strike women three times more than men. Some diseases have an even higher incidence in women. In fact, of the 50 million Americans living with autoimmunity, 30 million people are women, some estimates say." source
"While individuals with visible illnesses—those requiring canes or wheelchairs or causing physical manifestations (e.g., hair lost from chemotherapy, tremors and speech irregularities from Parkinson’s disease)—do encounter sociocultural difficulties, their obvious medical conditions typically engender ready support and understanding from others. However, for those with invisible illnesses, such support may not be as forthcoming. And for those with invisible illnesses that remain controversial in the medical community and public eye, support may not come at all." source
What's So Invisible About This Illness?
"Debilitating joint and muscle pain, fatigue, migraines, and other chronic “invisible” symptoms frequently characterize autoimmune and autoimmune-related disorders, such as lupus, rheumatoid arthritis, fibromyalgia (FM), and chronic fatigue syndrome (CFS), which is also called myalgic encephalopathy/encephalomyelitis or chronic fatigue and immune dysfunction syndrome (CFIDS). Although all individuals with autoimmune disorders usually encounter skepticism about their invisible symptoms from others, conditions such as lupus or rheumatoid arthritis are well-established—albeit sometimes difficult—medical diagnoses, and the general public is aware of them as such.
However, individuals with FM or CFS are not so fortunate. 'Not all chronic diseases are equal. Some are more accepted than others,' says Patricia A. Fennell, MSW, LCSW-R, the CEO of Albany Health Management Associates, Inc. 'There are more than 80 autoimmune diseases, and many can be considered invisible,' she says." source
Because autoimmune illnesses seem to be a shared general affliction with women of childbearing years, one could ask if the overall submission of women in previous generations has had anything to do with the tremendous fight for acceptance and treatment for these various autoimmune conditions. "The fact that women have enhanced immune systems compared to men increases women's resistance to many types of infection, but also makes them more susceptible to autoimmune diseases."
Since caregivers and the giving of care has been a female societal role, it makes sense for women to have helped one another through illness without any major media attention via publications or television. It was simply seen as a rite of passage, the role of young woman into caregiver. With more and more caregivers being struck with illness though, and with more attention and equality in medical treatment, more women are actively seeking medical assistance. source
"Even though there is some universally accepted knowledge about autoimmunity, its victims -- mainly women -- have suffered from a lack of focus and a scattered research approach. For example, autoimmunity is known to have a genetic component and tends to cluster in families as different autoimmune diseases. In some families, a mother may have lupus; her son, juvenile diabetes; her sister, antiphospholipid syndrome; and her grandmother, rheumatoid arthritis." source Is the fight for acceptance, treatment and a cure a feminist issue?
Real Life Voice: "As I have metal in my back and am in pain with this I sometimes use a stick, the interesting thing is people are more than happy to let me pass or give there seat up for me. When I don’t have a stick you can forget any help."
The Boogie Monster, or The Evil Genius Behind Illness
"More than 50 million people in the United States suffer from autoimmune diseases due to an abnormal immune reaction called autoimmunity. Autoimmunity is a major cause of many chronic diseases. This number, however, does not include several brain diseases and mental illnesses for which brain autoimmunity has been experimentally demonstrated. For example, a huge population with autism spectrum disorders (ASD), Alzheimer’s disease (AD), Tourette’s syndrome (TS) and obsessive-compulsive disorder (OCD) has been found to have autoimmunity to brain. This patient population is never included in epidemiological studies of the autoimmune diseases." source
People often ask, "Oh, what caused your illness?" and it's a very good question. It's such a good question there are few answers for it. Luck? Genetics? Bad luck? Bad genetics?
When you pose an even heavier question like What Causes Chronic Illness?, you're opening a Pandora's box of opinion, and not many eliciting these opinions are actually getting anywhere near to evolving a solution to the problem.
"Research of autoimmune diseases has not revealed the mechanisms that cause this response. According to A.D.A.M, one theory holds that various microorganisms and drugs somehow "triggers" off the immune response, particularly in those with a genetic predisposition to an autoimmune disease.
Someone can experience more than one autoimmune disease at the same time." source
Google estimates there are about 5,130,000 results for the question. And, in contrast to the myriad of hypothesis to answer the question of the cause of chronic illness, there are only a few path to diagnosis.
Are We There Yet?
One of the most frustrating and emotional aspects of chronic illness is the diagnosis, or the lack of a diagnosis. I know for me personally, it took years and every time I saw someone and paid for the expertise and walked away with nothing was a massive blow.
"Getting a proper diagnosis is sometimes as difficult as living with the disease itself. Victims face problems not only because physicians often don't think of autoimmunity, but also because of who they are, namely, women in the childbearing years. As a rule, this is a time in a woman's life when she looks healthy, though looks can be deceiving. Often, women who suffer from autoimmune diseases are not taken seriously when they first begin consulting their doctors. A woman's symptoms are likely to be vague in the beginning, with a tendency to come and go, and hard to describe accurately to her physician. In a typical scenario, she is often shunted from specialist to specialist and forced to undergo a battery of tests and procedures before a correct diagnosis is made, which can sometimes take years.
According to a 2001 survey by the Autoimmune Diseases Association, over 45 percent of patients with autoimmune diseases have been labeled chronic complainers in the earliest stages of their illness. This can be devastating to a young woman who may then begin to question her sanity as she tries desperately to find out what is wrong. Tragically, many of these patients suffer significant damage to their organs in the meantime and end up carrying this health burden with them for the rest of their lives because of the delay in diagnosis.
If the public, particularly women, and medical practitioners were more aware of the genetic predisposition to develop autoimmune disease, clearly there would be more emphasis on taking a medical history regarding autoimmune diseases within the family when presented by a patient with confusing symptoms. Earlier screening of these diseases could not only prevent significant and lifelong health problems but also actually prevent some autoimmune diseases." source
The Skeptics
Often, simply informing others about a medical condition is not enough explanation. "There are substantial differences in how individuals are viewed culturally and socially, depending on their diagnoses. Diabetes, lupus, heart disease, and cancer may all be considered invisible illnesses, but “no one would ever consider questioning the limitations of an individual who says [he or she has] one of these diseases,” notes Fennell. Yet, this happens frequently for those diagnosed with FM and CFS, she says. According to The CFIDS Association of America, the condition’s name trivializes the illness as little more than tiredness, even though the illness is associated with a “constellation of debilitating symptoms.”
I don't think people mean to be hurtful or ignorant about medical conditions, especially long-term painful ones. I think they just assume there's an answer to the question.
Take 2 of these and call me in the morning, went the saying. An aspirin a day keeps the doctor away. Lots of older people have mantras to health. In my day we smoked and drank and nobody got cancer.
Well, we know that's not true. You just didn't know you had cancer.
And it's the same for chronic illnesses. You didn't know you had it. You had it, and empirically we can look back and diagnose people with illnesses, it's just that you didn't know you had it. So you weren't expecting anything more than what was thrown at you.
Today, we can tell how many micrograms of iron you're lacking with a simple test done in 15 minutes.
Another helpful source of contention for our skeptics are the number of doctors and health related shows on tv. Someone is always handing out an answer and there's always a nifty little ending, endearing and heart-warming, all wrapped up in a 42 minute episode. If Dr. House can cure FMF, surely ANYONE can now that we've watched it on tv!!
When the FMF episode aired, I received a lot of emails and a few phone calls from overseas. Oh, they'd announce, almost ecstatic, there's this drug called COLCHICINE! And it cured them!!
And I'd have to break it to them that well, yeah, colchicine is effective in a lot of symptoms, but mostly it helps with the kidneys and doesn't do a lot else. And there's no cure. It's a lifetime sentence. Oh, and it makes you poo a lot.
So, when someone hears that you've got some chest pains and ongoing inflammation in your joints, they think back to an episode of The Doctors in which we were all told how fish oil helps to STOP inflammation. Or Dr. Oz told us that arthritis really only affects those 65 and over. And, if you're lucky, someone will hand you some colchicine because it helps cure diseases.
It doesn't forgive them for the stupid things they say, but they truly don't mean it. They're suffering from a bad case of Misinformation. Unless they have hearts of concrete, which a lot of them do, and they do honestly delight in younger people than themselves being sick, miserable and almost dying. I like to call them ogres, or trolls depending on the day.
Deborah Barrett, PhD, MSW, agrees: “For many invisible illnesses, there has been more understanding, attention, and validation from the medical community...in terms of public awareness and acceptance." source
Skeptics also seem to take issue when a sick patient rejoices in a diagnosis. See, she's managed to make herself sick enough to trick a doctor. She just wanted the attention. How can you be HAPPY to be so sick?
Dr. Elvira Aletta responds: "There may be a difference in how we respond to a diagnosis if the onset of the illness is sudden as opposed to insidiously appearing over months, if not years. It is common to hear from people who have lived with painful symptoms without a diagnosis to actually feel celebratory when they are finally given one. It would be understandable if that were not the reaction of someone who suddenly, 'out of the blue', discovers they have serious heart disease or cancer." source
How Did You Get So Sick? or What Did You Do to Deserve This?
In my time as a chronically sick person, I've run into people who have posed some interesting questions. One of my least favourite experiences in life was meeting with a woman who, when finding out my twin loss was *only* a first trimester loss, she proceeded to rip me a new arsehole. Because a real loss is after 22 weeks. And, she finished, aren't I lucky I don't have cancer.
Now, this particular day sticks in my head because it was one of the first full outings I did to get veggies and fruit from a local farmer's market. I had been preparing myself by doing 10 minute walks 3 times a day to gain the endurance to do this Farmer's Market trip.
And she cornered me in front of the chicken man, who sold farm fresh eggs and chicken. Hence the name, Chicken Man.
He looked embarrassed, ashamed that this woman was yelling at me for having the GALL to feel sadness around my twin loss and for telling people I was sick. After all, I could have cancer, you know, a REAL sickness.
We were at the farmer's market with friends and their baby boy, and when I sat down and told them what had happened, no one moved. I desperately wanted someone to go up to her and tell her to fuck off and die, but no one did. Instead, they all just murmured about illness and people not understanding.
That moment proved to me that there are people who *get* pregnancy loss and chronic illness and there are people who really don't deserve more than the shit on their shoes.
And since that moment, I really have very little time for people peddling me crap ideas.
I once had a woman selling Ganoderma mushroom paste ask me if I believed I made myself sick.
And I told her honestly, No. No I don't believe I made myself sick. Now, I'll be the first to tell you I'm not an optimist. I'm a realist. A pessimist in a nice, nifty new coat.
I had a bad upbringing. I suffered through miscarriage and infertility. There was a period where I didn't conceive for a year and a bit, followed by a string of miscarriages. I had a bad birth. And I lost more babies. I got sick. I'm still sick.
Nope, not much to feel joyous about, but I wouldn't relegate myself to the 'causes illness to happen' thinking. Personally, I think that's a bunch of garbage created to sell products and prey on people's fear, insecurity and sadness.
Yes, we've all met that person who is so negative despite all the good in their lives. And conversely, we've met the person who is so happy despite all the shit that rains.
Even more so, we've all met that person who said, oh, I can't do it and they didn't. Or prayed for help and they did do it, well.
Yes, there is a mental aspect of it. We are living, breathing organisms that are complex. Our brain is as much tied into our physicality as it is our mental thoughts and our emotional feelings.
If you're having a bad day, you're probably going to feel more sore, or anxious or helpless. Just as, if you're having a good day, you tend to sort of 'forget' a few of those niggles.
However, you didn't CAUSE this disease. You didn't bring it on yourself by having a Big Mac every Friday for a month. You didn't wish for a lifetime of pain and hardship by hoping that horrible bitch at work got a flat tire.
While we are beings in the infantismal flow of life, let's face it, we're not that powerful. Really, we're just some mould that got lucky in the evolution stakes and we managed to learn behaviours that enabled us to grow, mate and evolve.
To say that I am so powerful as to genetically alter my DNA for bad purposes is to say that I may as well go outside and end the droughts in Africa.
I believe there is a lot to the physiological malfunction of the body and the connection to poor physical form. That's why massage feels so good and how a chiropractor can relieve a headache or a backache. I think we have moved a lot from our natural, normal positioning by sitting and reclining. You can learn a lot by reading about proper physical functioning on some really good blogs. Investing in taking care of your body can relieve lots of pain, but it can become a long-term costly facet of care.
However, all that mental blaming is detrimental and whether you are or are not at the root of your own illness has very little to do with autoimmune disease and autoimmune arthritis or chronic muscle burning. There are a lot of people out there peddling products and services to help you overcome the problems you've caused yourself, or so they say.
Yes, let's be forthright with it. We're sick and we've all had a bad day or so. Maybe it's made it worse and maybe it hasn't. But, it does not give anyone a right to prey on someone's fears and insecurities. And it gives NO ONE the right to blame you for being sick.
Coping mentally and emotionally is going to be one of the best ways for you to have better physical days. Having better physical days is going to be one of the best ways for you have better mental and emotional days. It's a circle. It can't be broken off or segmented away. There is no room for BLAME in healing.
Coping With Chronic Illness by Dr. JoAnn LeMaistre is a very important article to read.
This is a fantastic article by by Mark Grant, MA.
Don't You Have a Doctor for That?
The best system of care is in which the patient feels understood. If the patient has pain, but has a doctor who acknowledges the pain, who sympathises, the patient goes away with a better feeling and understanding of the pain, the limitation in 'curing' or stopping the pain and an overall better prognosis.
The doctor-patient relationship is as important as a husband-wife relationship in the long-term care of a patient. That's why if your doctor is crap, you dismiss him/her and you seek someone else. In a system in which this model of care, turning to your GP for every path of guidance, is the rule, finding a good doctor is almost as difficult as finding ancient coins washed into the sand at the beach.
For me, in order to see a specialist, I must get a referral. And my referral is to either a public doctor or a private doctor. Because I have insurance, I often go private. Well, actually, to tell the truth, I've never gone public. For anything, other than birth. And that didn't go so well.
My relationship with my GP is paramount in regards to my care. This is a doctor who sees more files on me than I actually wish, but knows the ins and outs of my health almost as much as I do. It's taken years to find someone I trust so much. However, I wish it wasn't so doctor centric. I wish the health care model allowed me to nominate a physiotherapist as part of my initial response team, so as to get the quality recovery and joint protect I need.
In addition to the doctor-patient care model, there should always be the so-called "fringe treatments" that make up the core of your care: Physical care, Mental Care, Emotional Care. Music, craft, friends, family, photography, sewing, animals, stretching, yoga, sleep, vitamins, minerals, talk therapy. You need to combine the allopathic with the natural, with the alternative, with anything that matters a lot to you.
There are ways to ensure you have a better health picture overall, despite your constellation of symptoms, no matter how maddening.
If you can openly grieve, name your anger, vent in a safe and finite way, actively and physically challenge yourself and emotionally support yourself, you will feel better. And that involves a lot of people. Talk therapists, a physio, group supports, social activities, friends, family, pets.
It's almost too exhausting to try and create a better health for myself.
It's All in Your Head.
Here’s the thing about depression and chronic illness. It’s not depression if you are adjusting to a major loss. That’s called grief. Grief needs time to process. Allow yourself that time to mourn, to be angry and sad about what you’ve lost. You need time to accept the new reality.-- Dr. Elvira Aletta
But at some point, grief can morph into depression and that can make your physical illness worse.
I usually laugh when someone suggests my illness is all in my head. I don't hear much of it now, but I did. And I heard it even more from doctors, so called 'specialists' about my daughter. Now, I even find myself laughing when I hear someone lament that a doctor told them that it was 'all in your head'.
We must remember that people thought women were hysterical monsters, fit for nothing more than the sanitarium, during their periods. This hierarchical stigma of the male diagnostics of women is centuries old. And, when your symptoms don't fit their nice, neat tucked away manual, well, you're nothing more than that hysterical woman in need of a straight jacket and to be tucked away, nice and neat, away from causing them concern.
But, we do need to accept that there ARE mental symptoms in conjunction with physical symptoms. Of course there are! We are living, breathing organisms. We cannot simply turn off the brain in regards to physical symptoms, in as much as we cannot turn off our emotions when we feel pain.
Depression, and let's just clear the water, is commonly found as a co-morbid symptom of any ongoing illness. How can it not be? People become depressed over once in a lifetime changes. This is an ongoing, chronic, every day for the rest of your life issue. It's OK to say you have been or you are depressed in conjunction with your illness.
"Dr. Elvira Aletta suggests that one or a combination of the following factors can affect the emotional and psychological well being of those diagnosed with a chronic illness, and contribute to depression.
The situation. Loss. Grief.
Changes in appearance, mobility, independence.
The illness itself may have depression as a symptom.
Pain and fatigue.
Side effects of medication and other treatments.
Social pressure to appear okay especially hard if there’s no diagnosis." source
The role of denial cannot be ignored either. When you spend your entire day pretending there is nothing wrong, despite there actually being something hugely wrong, the mental, emotional and physical toll is exhausting.
There are a lot of treatments out there that can attempt to curb both the mental distress as well as reduce some of the physical symptoms of ongoing illness. I know quite a few people who use antidepressants for muscle control as well as anxiety or depression. Lots of people have had success getting outside and back into society, despite their illness, once they've successfully mastered antidepressants.
It's probably the most personal facet of your care and it's ok to ask for help.
Real Life Voice: "I try to pretend this hasn’t happened. My attempts to restore equilibrium lead me to think some moments or even hours that I do not have this disease. I pretend. My family pretends. Then I seem to have to start all over with my family, my friends, my life, again experiencing the shock, the uncertainty, the disruption, the striving and the acceptance."
The Silence
While numerous and highly visible campaigns have worked hard to educate the public about the plight of those with invisible illnesses, there will always be a hesitancy about it all.
If you know I'm sick, will you still treat me like you did before you knew?
_____Will our friendship change?
_________Will you want to date me?
____________Or will you think less of me?
_______________Will I become an inevitable burden to you?
That feeling of being a burden, to you, to life, to society, to my family, to my friends, to my children, to future generations is what keeps me, and countless others, quiet. If I complain, will you think I am not grateful for the help I receive?
If I complain, will you tell me all the things I *should* be grateful for? Will you decide not to help me for fear I might complain about needing help?
If I am quiet, and don't complain, and then you tell me I should have said something, who is helping whom?
It's profoundly complicated.
There was a very black time in my journey when I didn't want to get out of bed. I couldn't. It hurt. I couldn't eat. The medication was making me sick. I hated freely and I didn't care who I hurt. All I wanted was the permission to die. I had broken it down into 2 reasons. One, I didn't want to live if living hurt so much and because I felt like such a burden.
I hadn't dreamed that I'd get married and have children and become a huge, physical, mental, financial burden to them. That wasn't what I signed up for. That certainly isn't what they signed up for. And the cost was escalating out of control. There was no help available.
As a society, we are raised to become self-sufficient. I was told it was the goal of a good parent: To create a self-sufficient 18 year old who could go out and fend for himself.
Some societies and governments work to provide for those less sufficient. I'm lucky to live in one such society where the bulk of my medical care is provided by the taxpayer. And I hope it's something that catches on globally. But there is a great and paradoxical disgust of people using these services.
"None of us struggling with chronic illnesses want to appear visibly disabled to our friends, family or co-workers (or for that matter to total strangers). So, we learn to adapt and become adept at fooling onlookers, along with keeping helping hands at arm's length. Its a hollow victory though.
Sooner or later we all need a helping hand even if we are reluctant to admit it. It is not always easy relying on the kindness of others." -- source
Real Life Voice: "My Social Security Disability application was approved. I’ve been told that only 30% of first-time requests are granted disability payments. I’m obviously relieved and grateful to qualify for social security. My initial reaction to all this news was something like … “Great, I’m approved for disability!”; followed by … “Crap, I’m approved for disability!”
Give Me a Call if You Need Anything
If you are wanting to help a friend or family member with aspects of their ongoing illness, I ask that you read this open letter so that you can understand some aspects of living with an ongoing illness.
“Friendship is born at that moment when one person says to another: "What! You too? I thought I was the only one.”
― C.S. Lewis
One of the things that heals the wounds is time. And what makes time so worthwhile are the people we spend it with. I feel so tremendously grateful for the friends I have had, over time, and hope to keep. It doesn't mean they've always done or said the right things, but they care.
When a woman loses a pregnancy, a baby or an infant, one of the things we like to educate people to say is very simple. I'm sorry. I'm sorry for your loss.
And, if you don't know what to say, you simply say: I don't know what to say right now, but I am so sorry for your loss.
And it's the same with most loss. You verbalising that I have had a loss is what is most important. You accepting my loss with me. I know you don't understand it fully. But I know you care.
We have a habit of wanting to quickly rush in and fix it all. Smooth it all over. Remove the pain. Curb the inconsistencies. Flush out all that is wrong with the world today. And you can't do that with chronic illness.
I will still be sick tomorrow. My house will still be a mess. My bills won't be paid. I won't have extra funds. My yard will look like a primitive jungle and to be honest, I don't have the time, the energy or the consideration to really care. It bothers me, oh it gets under my skin like you wouldn't believe, but I want to spend my time and my energy and my consideration on what is important to me.
Once, when I was part of an early childhood setting, a mother had an unsettled baby. I offered to come over after lunch and play with her older child or the baby while she slept. She scoffed very loudly: You?! Of all people, you!!
I think that did more to ruin bits of me than anything else at the time. I had been working so hard to have energy and stamina and it would mean a lot TO me to help. It also would have meant my daughter would have had a playmate for the afternoon and I would get to hold a baby, something my heart yearns for.
But no. All she could see if that this sick woman was offering to help. How bad a situation must she be in for a SICK woman to offer to help. At that moment I wasn't actually a human being. I was a subject of her pity. No, no, no. She wasn't going to be having a SICK person helping her, she wasn't that desperate! I was the desperate one, what with being sick and all.
What she didn't know is that I'm quite good at settling unsettled babies, as I've had one myself. And that it would have done us both a world of good.
I'm not saying to let disabled people come into your life just because you feel bad for them, but don't write someone off just because they physically aren't perfect. I'm still a mother. I'm still an academic.
Don't be put off when I tell you about my illness. I'm letting you know, ahead of time, for what's going to happen to me. It, however, doesn't lessen WHO I am.
So, to help me, is to let me back into life. Don't try and protect me from failing. I already know I'm not going to be perfect or that I'm going to flounder. But so do other people. Let me back into life.
* Rest Ministries has an excellent article on things TO say and things NOT to say. They also have a great article on how to help your friend or loved one.
* 50 ways to help a chronically ill friend
* Reach Out Australia has some good ideas too.
Seriously, the two best websites on Chronic Illness are But You Don't Look Sick and the Invisible Illness Awareness Week blog.
Your Illness Is Not Your Fault by Tamara Staples here
Five Simple Words to Keep Chronic Illness at Bay by Madeleine Parishhere
For more information, and support, like the Invisible Illness Awareness Week Facebook Page.
5 Rules for Living Well with a Chronic Illness -- source
Thursday, October 13, 2011
The Hip Song
I saw my GP this morning (finally!!) and we have some concerns about the hip. He thinks it's muscular, but given how sore it is, we're thinking it needs an xray. Today the pain was about a 9.5 on the 10 scale and I was desperate for some morphine. However, he's given me some Tramadol and I remembered why I stopped taking it.
Hot flashes, sweats and a really agitated, anxious mind space. I had to declutter the bedroom, despite the pain because I felt so dizzy, sick and confused.
I did far too much walking and am paying the price.
The pain is simply destroying my ability to cope. I've had a bad day. I scratched the car door, got a parking ticket and can't walk very far.
I also have a very bored 6 year old who needs to be doing things.
When I was hobbling to the car, I started singing:
Every Step You Take lyrics (the revised edition):
Every step I take
Every limp I make
Every bone I break
Every step I take
The pain is hurting me.
Every single day
Every pain I obey
Every exploratory surgery
Every night I pray:
"Please go away!!"
Oh can't you see
The pain is killing me?
How my poor hip aches
With every step I take.
Every move I make
Every bone I break
Every smile I fake
Every pain killer I take
It'll be hurting me.
Since my diagnosis, I've been lost without a trace
I dont't sleep at night, because of my back brace
I took those tablets and my head is in outer space
I feel so numb and I'm like a mental case
I keep calling doctor, doctor please...
Oh can't you see
I need a cup of coffee?
How my poor hip aches
With every step I take.
Every move I make
Every bone I break
Every smile I fake
Every pain killer I take
It'll be hurting me.
And, just because they're gorgeous (and often suffer from hip dysplasia):
Hot flashes, sweats and a really agitated, anxious mind space. I had to declutter the bedroom, despite the pain because I felt so dizzy, sick and confused.
I did far too much walking and am paying the price.
The pain is simply destroying my ability to cope. I've had a bad day. I scratched the car door, got a parking ticket and can't walk very far.
I also have a very bored 6 year old who needs to be doing things.
When I was hobbling to the car, I started singing:
Every Step You Take lyrics (the revised edition):
Every step I take
Every limp I make
Every bone I break
Every step I take
The pain is hurting me.
Every single day
Every pain I obey
Every exploratory surgery
Every night I pray:
"Please go away!!"
Oh can't you see
The pain is killing me?
How my poor hip aches
With every step I take.
Every move I make
Every bone I break
Every smile I fake
Every pain killer I take
It'll be hurting me.
Since my diagnosis, I've been lost without a trace
I dont't sleep at night, because of my back brace
I took those tablets and my head is in outer space
I feel so numb and I'm like a mental case
I keep calling doctor, doctor please...
Oh can't you see
I need a cup of coffee?
How my poor hip aches
With every step I take.
Every move I make
Every bone I break
Every smile I fake
Every pain killer I take
It'll be hurting me.
And, just because they're gorgeous (and often suffer from hip dysplasia):
Monday, October 3, 2011
The Roulette Wheel of Diagnosis
Dear body, I'd reeeeally like to go to the library today. Could you please stop hurting? Please? (The short answer was no.)
Part of living with something no one understands is that you don't understand it either. You probably 'get' it more than others, but because there is no standard rule, no benchmark to gauge your own normalcy, you always find yourself questioning it. If I hear about Vasculitis, I immediately go re-google it to make sure I don't secretly have it and my rheum missed it.
(PS. If you or someone you love has vasculitis, the John Hopkins vasculitis resource online is AMAZING.)
It's like diagnosis is a roulette wheel. Every time you hear of something, maybe, truly this is it! You race online to see what the symptoms are. Oh hey, that sorta kinda sounds like me. Maaaaybe this is it!!
Nope. No. It isn't. Ok. Next!
House, MD was truly epic for me because people would watch an episode and send me an email. Oh Jen, have you tried Wegener’s Granulomatosis? they'd ask. If I had I'd reply yes, and if not, I'd add it to the list of other possible diseases I'd take to the rheum.
Then, I'd open my speech by saying, "I'm sure you've considered Wegener’s Granulomatosis, but can you tell me why this disease doesn't fit my symptom?"
If it was my trusted Rheum, he'd take a breath, brain going through a million neural file cabinets and comparing my notes to his stored data files. Sometimes he'd actually hold his breath while thinking. I don't enjoy this patient induced torture, truly, but it does make me pleased to have a smart doctor.
Generally, everything comes down to my brain MRI and my lung x-rays and that incredible LACK of elevated anything in my labs.
MRI of brain with TRaPs:
Me:
Depending on who I'm having my appointment with, I can be quite forward and say, "So, let's say this is an atypical presentation of xyz, what is the treatment?"
And believe it or not, the majority of treatments are the same.
Weight loss
Light physiotherapy
NSAIDs
Steroids
Plaquinel
Immunosuppressives
And, if you're lucky, injectable biologics.
Occasionally, like with Familial Mediterranean Fever, you might stumble on success with Colchicine, but it's very rare for a single drug to be SO effective for a disease.
When House did an episode with a father and daughter having Familial Mediterranean Fever, my diagnosis at the time, I received so many emails about it! We didn't see the episode for at least a year, but it was frustratingly amazing that the show featured FMF.
Of course, the father and daughter make a 100% recovery of symptoms after being treated with IV colchicine.
When I saw the episode, I swore off the show for the season. It was so demoralizing that a chronic, incurable condition was waved off with a magic wand of a day of IV drugs. IV colchicine is a last resort, and most patients will still have symptoms of the disease after the acute treatment. They are STILL sick, every day, because it is a Genetic condition. Not a once in a lifetime acute illness.
This is the daily battle of life with a genetic illness. There is often no reprieve from the symptoms, but like everyone else, there are good days and bad days.
At the moment, I am severely fatigued. There just is not enough oomph to force these muscles to work. It's definently a Spoon Theory day for me.
Aside from the fatigue, my muscles are burning all over. In my arms, in my legs, in my chest. I've got that heavy band feeling at the back of my head. I want to be up and active. I want to do so much more. But the burning is practically crippling at times. And then, oddly enough, it abates for a few hours only to come back.
I'm making cottage pie for tea tonight. I love any excuse to have mashed potatoes. However, there is a lot of chopping involve. I've broken it into chunks, approximately 90 minutes apart. You'd think it was a military operation, but no. That's life living with chronic impairments.
I'm feeling quite disappointed with myself in regards to my weight. Last year I felt so healthy and alive and lost about 14kg. My physio kept warning me that strenuous exercise can actually trigger inflammation in chronic illness, especially inflammatory illnesses. But, I didn't listen.
And spent months battling chronic inflammation in my gallbladder.
Mine isn't nearly as cute. However, if you're like me and you'd love to remember your organ as sweet, not painful, then try I Heart Guts.
I've never regained that mobility or freedom since. And, all those 14kg are back. High dose steroids for the gallbladder, fatigue and general, often overwhelming, fear of re-triggering all that inflammation has brought it all back.
I've made a goal of getting 50,000 steps on my stepper before xmas. I need to increase my cardio and try to get back some of my mobility. I'd also like to not feel like a beluga whale in a swimsuit.
Actual Photo of Me This Summer:
Part of living with something no one understands is that you don't understand it either. You probably 'get' it more than others, but because there is no standard rule, no benchmark to gauge your own normalcy, you always find yourself questioning it. If I hear about Vasculitis, I immediately go re-google it to make sure I don't secretly have it and my rheum missed it.
(PS. If you or someone you love has vasculitis, the John Hopkins vasculitis resource online is AMAZING.)
It's like diagnosis is a roulette wheel. Every time you hear of something, maybe, truly this is it! You race online to see what the symptoms are. Oh hey, that sorta kinda sounds like me. Maaaaybe this is it!!
Nope. No. It isn't. Ok. Next!
House, MD was truly epic for me because people would watch an episode and send me an email. Oh Jen, have you tried Wegener’s Granulomatosis? they'd ask. If I had I'd reply yes, and if not, I'd add it to the list of other possible diseases I'd take to the rheum.
Then, I'd open my speech by saying, "I'm sure you've considered Wegener’s Granulomatosis, but can you tell me why this disease doesn't fit my symptom?"
If it was my trusted Rheum, he'd take a breath, brain going through a million neural file cabinets and comparing my notes to his stored data files. Sometimes he'd actually hold his breath while thinking. I don't enjoy this patient induced torture, truly, but it does make me pleased to have a smart doctor.
Generally, everything comes down to my brain MRI and my lung x-rays and that incredible LACK of elevated anything in my labs.
MRI of brain with TRaPs:
Me:
Depending on who I'm having my appointment with, I can be quite forward and say, "So, let's say this is an atypical presentation of xyz, what is the treatment?"
And believe it or not, the majority of treatments are the same.
Weight loss
Light physiotherapy
NSAIDs
Steroids
Plaquinel
Immunosuppressives
And, if you're lucky, injectable biologics.
Occasionally, like with Familial Mediterranean Fever, you might stumble on success with Colchicine, but it's very rare for a single drug to be SO effective for a disease.
When House did an episode with a father and daughter having Familial Mediterranean Fever, my diagnosis at the time, I received so many emails about it! We didn't see the episode for at least a year, but it was frustratingly amazing that the show featured FMF.
Of course, the father and daughter make a 100% recovery of symptoms after being treated with IV colchicine.
When I saw the episode, I swore off the show for the season. It was so demoralizing that a chronic, incurable condition was waved off with a magic wand of a day of IV drugs. IV colchicine is a last resort, and most patients will still have symptoms of the disease after the acute treatment. They are STILL sick, every day, because it is a Genetic condition. Not a once in a lifetime acute illness.
This is the daily battle of life with a genetic illness. There is often no reprieve from the symptoms, but like everyone else, there are good days and bad days.
At the moment, I am severely fatigued. There just is not enough oomph to force these muscles to work. It's definently a Spoon Theory day for me.
Aside from the fatigue, my muscles are burning all over. In my arms, in my legs, in my chest. I've got that heavy band feeling at the back of my head. I want to be up and active. I want to do so much more. But the burning is practically crippling at times. And then, oddly enough, it abates for a few hours only to come back.
I'm making cottage pie for tea tonight. I love any excuse to have mashed potatoes. However, there is a lot of chopping involve. I've broken it into chunks, approximately 90 minutes apart. You'd think it was a military operation, but no. That's life living with chronic impairments.
I'm feeling quite disappointed with myself in regards to my weight. Last year I felt so healthy and alive and lost about 14kg. My physio kept warning me that strenuous exercise can actually trigger inflammation in chronic illness, especially inflammatory illnesses. But, I didn't listen.
And spent months battling chronic inflammation in my gallbladder.
Mine isn't nearly as cute. However, if you're like me and you'd love to remember your organ as sweet, not painful, then try I Heart Guts.
I've never regained that mobility or freedom since. And, all those 14kg are back. High dose steroids for the gallbladder, fatigue and general, often overwhelming, fear of re-triggering all that inflammation has brought it all back.
I've made a goal of getting 50,000 steps on my stepper before xmas. I need to increase my cardio and try to get back some of my mobility. I'd also like to not feel like a beluga whale in a swimsuit.
Actual Photo of Me This Summer:
Thursday, September 1, 2011
Hoping he's no Boob
It's boob day.
I'm not feeling too flash today and feel really pessimistic and melancholic about it all.
I've met so many specialists who direct all conversation, don't listen, preach and then take your money, leaving you feeling alone, unheard and pretty pissed off. And I'm getting that vibe today. I don't know why.
The left boob has been so sore and that worries me. I can't sleep on it and whenever I roll it squishes and wakes me up.
I ended up taking the seroquel on night 2. I had begun to get the shakes and that buzzing noise in my head had returned. I told Matt it sucked that I feel so chained and addicted to it, but, as he pointed out, it's a med I take for a purpose.
So, I suppose I really do need to work with a knowledgeable Pdoc and find some way of keeping mental peace without upsetting the boob.
As we get closer to Breast Cancer Awareness month (October), I am seeing so much more in print and on tv about 'being aware' of symptoms, seeing your doctor, etc and it make me feel all the more that I'm going to be dismissed and shown the door.
I never should have seen the female doc. I should have gone straight to my normal GP and just gotten over the conservative side.
I found something called Myofascial Pain Syndrome that often has breast pain and inflammation. I'm going to try to ask the breast surgeon about it but I'm so used to being dismissed, I doubt i'm going to get far.
So, for now we wait.
I'm not feeling too flash today and feel really pessimistic and melancholic about it all.
I've met so many specialists who direct all conversation, don't listen, preach and then take your money, leaving you feeling alone, unheard and pretty pissed off. And I'm getting that vibe today. I don't know why.
The left boob has been so sore and that worries me. I can't sleep on it and whenever I roll it squishes and wakes me up.
I ended up taking the seroquel on night 2. I had begun to get the shakes and that buzzing noise in my head had returned. I told Matt it sucked that I feel so chained and addicted to it, but, as he pointed out, it's a med I take for a purpose.
So, I suppose I really do need to work with a knowledgeable Pdoc and find some way of keeping mental peace without upsetting the boob.
As we get closer to Breast Cancer Awareness month (October), I am seeing so much more in print and on tv about 'being aware' of symptoms, seeing your doctor, etc and it make me feel all the more that I'm going to be dismissed and shown the door.
I never should have seen the female doc. I should have gone straight to my normal GP and just gotten over the conservative side.
I found something called Myofascial Pain Syndrome that often has breast pain and inflammation. I'm going to try to ask the breast surgeon about it but I'm so used to being dismissed, I doubt i'm going to get far.
So, for now we wait.
Tuesday, August 30, 2011
Funky Boobs
When you have funky genes, it makes sense that everything else about you is funky. Funky gallbladder, funky knees, funky sense of humour. And to that, I can add funky boobs.
Earlier this year, Soph (and Matt) were diagnosed with Asperger's Syndrome. It's hard to say whether you're actually 'diagnosed' with Autism or whether the light has finally shown through and you come to know who you really are.
We switched schools when the first was not adequate for Sophie's needs and it was a really stressful time because we hadn't yet received the AS diagnosis for her. All we knew was that she was struggling with tremendous anxiety and having a difficult time with everything. She was basically shutting down in class: no talking, no eye contact, crying, etc.
It was thrown back to us that we were doing something wrong. We kept saying that it must be the teacher (who was quite a grouchy, yelling teacher) and in the end we all decided to move on.
Interviewing at other schools is hard because you're viewed as either someone who's been trodden on or someone who's going to trod on you to get own our way.
Not pleasant!
I was really struggling to get some sleep, up at night with Sophie screaming in her sleep. Up at night with nightmares. I asked my GP for something, ANYTHING, to help me sleep. I'm already on Seroquel 300mg at night for insomnia. He said, go ahead, take 2 on nights you're feeling quite stressed.
It really does nothing more to help you sleep, I found. It does, however, make you more zombified. Not really worth it. And for those of you looking to see if doubling your dose will help you sleep, it doesn't actually. Try some valerian tablets along with your seroquel dose.
Or get up. Seriously, the zombie nature of the drug is so difficult to tolerate, and if you're taking pain killers, please be careful doubling your dose and taking any sort of codeine or narcotic.
In May I started getting twinges in my left breast. I don't really get tender breasts before a period, so if I do feel something, it gets my attention. It was like a sharp stab and it was dull and came and went.
However, as time went on, the breast was getting bigger, angrier with that stabbing sensation but there was never a red mark or a lump or even anything coming out.
Finally, this past cycle, it was getting to the point of severe pain and a yellow goo coming out by itself. I didn't really freak out because I knew whatever it was, it was going to get handled with care and swiftly.
I saw a GP, not my own because he's a man and I don't feel comfy with a man handling the gear, and she seemed ok. She didn't think it was an increase in estrogen or prolactin. She was more concerned about the lump she expected to find.
I hadn't found anything. Matt hadn't found anything. She assured me she was quite good at finding them. And then, she didn't find anything. Nothing at all.
That's when she started getting worried. She mentioned that the pain radiated upwards and into the underarm and it could be a thyroid thing or nothing but it needed to be seen. So, 2 days later I was in the ultrasound room with the older woman trying to get my boob to lactate whatever this goo was.
She couldn't get anything out. She couldn't find any lumps, calcium or pea sized blocks in the ducts. And, she said shaking her head, the pain isn't in the dense tissue as you'd expect with Fibrocystic Breast problems, it's all in the light tissue.
The radiologist came in and said that given my age, they didn't think a mammogram was wise because of the dose of radiation I'd need to get a good look. All my thoughts on whether to get a thyroid guard were directed to that fact that we NEED them if the dose of radiation is high enough to dissuade a radiographer from a mammogram. It could be the age and density of my breasts, but it did make me worried I hadn't bought a thyroid guard.
When she came in to print off the scans, she told me to go home and do some digging with my prescription medication because she does occasionally see this in HRT patients. The extra estrogen, she said.
So, we came home, happy that there is obviously nothing pathological with the breast but shaking our heads in wonder. There is nothing wrong and yet the breast is leaking goo and it hurts! Hurts!!
I started icing it instead of putting heat to it and that seems to help. I tried cabbage on several occasions but it did nothing. Perhaps hot cabbage leafs might have given more relief. It's not really something I'm willing to try just yet. The idea alone sort of icks me out.
I started the steroid because it makes everything else funky, might as well go there. Nope. Nothing. Steroids aren't really indicated in boob disorders at all, except in the treatment of abscess or acute mastitis to help the swelling.
I went to the Omeprazole and got lots of links to breast leakage and breast growth with other gastro drugs like Domperidone. I was given Dom in 02 post gastroscopy to deal with quite bad vomiting from 'stiff' digestion as the old man said. It brought in full milk. That's when I started getting a bit pissed that the female GP didn't even order a single blood test.
So I looked into Seroquel, the drug I LEAST expected to cause breast problems. In high doses, and we're talking the high dose schizophrenia doses, 1600mg a day, there is quite a common report on breast inflammation, breast leakage and discharge. But I take 300mg and have never been on a higher dose. I couldn't find anything about breast discharge at 300mg. That's when I went to the crazymeds forum and asked. At 300mg, the drug begins to impair estrogen receptors and increases in prolactin have been noticed.
So, if I had been at 600mg for a few weeks, that might have been enough to trigger the breasts to begin to fill, then I jumped off, leaving the breasts in a hormone flux.
It seems the only solution to the problem is either to get a script for a drug that turns off the prolactin centre and take the 2 together for the rest of your life, or you wean.
I didn't want to wean. I spent about 48 hours in a funk of 'what will my life be like' post-Seroquel. Then I had a horrible day with the pain on Sunday and thought, nope, I'm getting off. So I read all Monday on how to wean.
The general practice is 50mg a month while titrating up with another drug.
50mg a month means 6 months of possible breast pain. And a lot of pain killers.
The most closely related drug also causes prolactin issues, and I don't want to do that. Plus, I thought, it will take MONTHS to get in to see a psych doctor. I will ring and make a GP appt and I will just go down 100mg and see how that feels in the boob.
Night 1: Not a lot of sleep but some. Lots of waking up in active tremor. Headache. Nausea. Runny Poo.
Thoughts of OH G-d HOW AM I GOING TO DO THIS!?
Better with hot tea.
The boob is absolutely no better, but I imagine until we get the anti-prolactin drug into my system it's just going to keep hurting.
I don't recall what colostrum was like, but that must be what the goo is, though it much denser and more like thick pus. I can't make it come out, it just comes when ready. It has no odour and it isn't stretchy like mucus. There is no blood.
I'm hoping the breast surgeon has a clue and gets me that drug. Breast pain while weaning is sort of a double edged sword.
Off for more hot liquid to stave off the nausea.
Earlier this year, Soph (and Matt) were diagnosed with Asperger's Syndrome. It's hard to say whether you're actually 'diagnosed' with Autism or whether the light has finally shown through and you come to know who you really are.
We switched schools when the first was not adequate for Sophie's needs and it was a really stressful time because we hadn't yet received the AS diagnosis for her. All we knew was that she was struggling with tremendous anxiety and having a difficult time with everything. She was basically shutting down in class: no talking, no eye contact, crying, etc.
It was thrown back to us that we were doing something wrong. We kept saying that it must be the teacher (who was quite a grouchy, yelling teacher) and in the end we all decided to move on.
Interviewing at other schools is hard because you're viewed as either someone who's been trodden on or someone who's going to trod on you to get own our way.
Not pleasant!
I was really struggling to get some sleep, up at night with Sophie screaming in her sleep. Up at night with nightmares. I asked my GP for something, ANYTHING, to help me sleep. I'm already on Seroquel 300mg at night for insomnia. He said, go ahead, take 2 on nights you're feeling quite stressed.
It really does nothing more to help you sleep, I found. It does, however, make you more zombified. Not really worth it. And for those of you looking to see if doubling your dose will help you sleep, it doesn't actually. Try some valerian tablets along with your seroquel dose.
Or get up. Seriously, the zombie nature of the drug is so difficult to tolerate, and if you're taking pain killers, please be careful doubling your dose and taking any sort of codeine or narcotic.
In May I started getting twinges in my left breast. I don't really get tender breasts before a period, so if I do feel something, it gets my attention. It was like a sharp stab and it was dull and came and went.
However, as time went on, the breast was getting bigger, angrier with that stabbing sensation but there was never a red mark or a lump or even anything coming out.
Finally, this past cycle, it was getting to the point of severe pain and a yellow goo coming out by itself. I didn't really freak out because I knew whatever it was, it was going to get handled with care and swiftly.
I saw a GP, not my own because he's a man and I don't feel comfy with a man handling the gear, and she seemed ok. She didn't think it was an increase in estrogen or prolactin. She was more concerned about the lump she expected to find.
I hadn't found anything. Matt hadn't found anything. She assured me she was quite good at finding them. And then, she didn't find anything. Nothing at all.
That's when she started getting worried. She mentioned that the pain radiated upwards and into the underarm and it could be a thyroid thing or nothing but it needed to be seen. So, 2 days later I was in the ultrasound room with the older woman trying to get my boob to lactate whatever this goo was.
She couldn't get anything out. She couldn't find any lumps, calcium or pea sized blocks in the ducts. And, she said shaking her head, the pain isn't in the dense tissue as you'd expect with Fibrocystic Breast problems, it's all in the light tissue.
The radiologist came in and said that given my age, they didn't think a mammogram was wise because of the dose of radiation I'd need to get a good look. All my thoughts on whether to get a thyroid guard were directed to that fact that we NEED them if the dose of radiation is high enough to dissuade a radiographer from a mammogram. It could be the age and density of my breasts, but it did make me worried I hadn't bought a thyroid guard.
When she came in to print off the scans, she told me to go home and do some digging with my prescription medication because she does occasionally see this in HRT patients. The extra estrogen, she said.
So, we came home, happy that there is obviously nothing pathological with the breast but shaking our heads in wonder. There is nothing wrong and yet the breast is leaking goo and it hurts! Hurts!!
I started icing it instead of putting heat to it and that seems to help. I tried cabbage on several occasions but it did nothing. Perhaps hot cabbage leafs might have given more relief. It's not really something I'm willing to try just yet. The idea alone sort of icks me out.
I started the steroid because it makes everything else funky, might as well go there. Nope. Nothing. Steroids aren't really indicated in boob disorders at all, except in the treatment of abscess or acute mastitis to help the swelling.
I went to the Omeprazole and got lots of links to breast leakage and breast growth with other gastro drugs like Domperidone. I was given Dom in 02 post gastroscopy to deal with quite bad vomiting from 'stiff' digestion as the old man said. It brought in full milk. That's when I started getting a bit pissed that the female GP didn't even order a single blood test.
So I looked into Seroquel, the drug I LEAST expected to cause breast problems. In high doses, and we're talking the high dose schizophrenia doses, 1600mg a day, there is quite a common report on breast inflammation, breast leakage and discharge. But I take 300mg and have never been on a higher dose. I couldn't find anything about breast discharge at 300mg. That's when I went to the crazymeds forum and asked. At 300mg, the drug begins to impair estrogen receptors and increases in prolactin have been noticed.
So, if I had been at 600mg for a few weeks, that might have been enough to trigger the breasts to begin to fill, then I jumped off, leaving the breasts in a hormone flux.
It seems the only solution to the problem is either to get a script for a drug that turns off the prolactin centre and take the 2 together for the rest of your life, or you wean.
I didn't want to wean. I spent about 48 hours in a funk of 'what will my life be like' post-Seroquel. Then I had a horrible day with the pain on Sunday and thought, nope, I'm getting off. So I read all Monday on how to wean.
The general practice is 50mg a month while titrating up with another drug.
50mg a month means 6 months of possible breast pain. And a lot of pain killers.
The most closely related drug also causes prolactin issues, and I don't want to do that. Plus, I thought, it will take MONTHS to get in to see a psych doctor. I will ring and make a GP appt and I will just go down 100mg and see how that feels in the boob.
Night 1: Not a lot of sleep but some. Lots of waking up in active tremor. Headache. Nausea. Runny Poo.
Thoughts of OH G-d HOW AM I GOING TO DO THIS!?
Better with hot tea.
The boob is absolutely no better, but I imagine until we get the anti-prolactin drug into my system it's just going to keep hurting.
I don't recall what colostrum was like, but that must be what the goo is, though it much denser and more like thick pus. I can't make it come out, it just comes when ready. It has no odour and it isn't stretchy like mucus. There is no blood.
I'm hoping the breast surgeon has a clue and gets me that drug. Breast pain while weaning is sort of a double edged sword.
Off for more hot liquid to stave off the nausea.
Friday, February 18, 2011
A little more Badger
I'm always hesitant when the phone rings. I don't know if it's a general phone avoidance or phone phobia, but I get this internal cringe when the phone rings. It's not like I've had many horrible phone experiences in my life, but I am, decidedly, anti-phone these days.
It takes a lot of effort to remove oneself from a comfy couch and walk to the phone. You'd think, being in the company of one who loves emerging technology, we'd have a portable phone but pshh. Seriously, who uses those things? We have 1 phone jack and an antiquated non-cordless phone.
When the phone rings, it takes a lot to answer it. It's either someone confirming an appointment or someone changing an appointment or someone trying to change my power company. No one ever rings to offer me a million dollars or a chat. Not that I'd be keen on a chat. I'd have to sit on the stairs and that's really uncomfy.
And I'm exactly the same way with my mobile. It's more likely to run out of batteries than be used, though I am trying to get better at texting people. I just enjoy socialising when it's my own decision.
I spent some time this morning trying to pass on and receive messages with my gastro. He's been quite a find, after the first gastro was a complete waste, so I look forward to hearing from him. He is genuinely interested in the TRAPS disease and wants to know more. He also, genuinely, wants to help.
So when he mentioned that he'd try to see me ASAP when symptoms started forming a pattern, I leapt on that. Are you sure?? I asked, aghast that someone was actually taking me seriously. Really? And in my head I'm thinking, pinch me! Pinch me! I'm dreaming!
Last Friday morning, thursday night I guess, I noticed a pinching feeling in the area surrounding my right kidney. It was enough to wake me several times. Ow, I thought. That's not good. But I went on into 'work' and dutifully ignored it.
Saturday morning it was more than a pinch and more than an occasional Ow. It was more of a sustained owwwww but still only coming in periodic waves.
Today, now a week on, it's more of the 'why do I need a kidney and for the love of G-d would you stop' sensation. I rang my GP's office on Monday looking for an appointment. 'You need to ring a week in advance' the woman tells me curtly (as though I plan these things, as you would a teeth cleaning). He can see you 3:15 next Monday. Oh, I say. That's quite a ways away. Take it or leave it she tells me. Yikes! Drives a hard bargain, these headphone equipped women.
So, here we are. It's Friday. It hurts and I see the doctor on Monday. Options available to me are the 'after hours' or accident/emergency variety of doctor. The emergency room (seems a bit OTT, you know?) or wait.
So I rang the Gastro, thinking of his offer. I get put onto his PA, a wonderful and lovely and patient girl. Oh, she says, are you the TRAPS lady? I hate to call you that, she says.
Oh no, I butt in. I've been called worse. It is me and I've got these symptoms and he said he wanted to know when it was happening. Tell him that it's mild now but it's going to get worse and I thought he ought to know.
I like how you're so calm, she says. Like you know it's going to get worse and yet you're so calm.
Well, I think to myself. I've done the panic and cry thing in the past and all I did was upset everyone around me. Besides, it's not going to kill me...yet.
My counselor and I have agreed that I enjoy the art of grim and depressing humour. Not in the Hannibal Lecter sort of way, though I do enjoy a nice Chianti. I still have a couple bottles in the cellar and need to check their drink by dates. (What? Didn't you spend your 20s cellaring imported Italian wines? No?)
I don't know what it is about me, but I have a tendency to deflect situations into some macabre, satiric humour. I read once that comedians are funny because they're brutally honest about their pain and they're ok with it. I think of myself as an excellent comedian. It is how I deflect pain. It's how I degrade myself and it's how I am brutally honest with my own limitations.
And I adore making people laugh. Laughter is a nice way of someone saying they accept you. I don't think people expect it when they meet me. Sitting in a doctor's office and dealing with these concepts and walking away with him laughing is a highlight for me. I've had doctors comment that they adore working with me because we get to be so real and so informal. I also enjoy when they curse.
I once had a GP, who I was very fond of, bang his head on his desk when he realised he was completely overwhelmed with being able to help me and said: Frankly, I should just discharge you because you're too hard. But I like you too much.
And maybe that's the thing. I like that people like me, and I like to make things easier for them. Because life is hard. I know how hard it can be. So a light moment for them and for me is pure gold.
My counselor says it's a self-soothing mechanism that I've taught myself over time. That by somehow finding a spark of humour, I've accepted the bleak, decided I'm over the bleak, and can move on to positive things.
See, I AM positive. It's just my positivity isn't rainbows, bunnies and fluffy. It's decidedly dark, meaty and more Philly Cheesesteak than brown rice and miso.
So when the lovely PA responds that I'm calm despite what's going on, to me it's a non-issue. And I actually sort of thought, well, what would you prefer? Me sobbing on the phone and clutching the ground in agony? But then I thought, omg, maybe I am going to die and I should head her warning and, yeah, nah. Not going to happen.
It gives me mental clarity, the grim Jennifer. It lets me get the crap out of the way and get onto business. It also lightens the load. I don't want your sadness, I'm not pitying myself so let's get to the real business of making me better.
I'm finding it hard to curb the habit though. In front of my daughter, I don't want to joke about her health. I'll joke about her high energy, her inability to sleep before 10pm, but this disease, nope. Not funny. Not to me. I'm a real badger about it.
We're not going to dismiss it. I'm not going to allow you to lessen this illness. I'm not going to allow you to replace your discomfort with a blase attitude. And maybe it makes me appear boring and serious and a real stick in the mud.
I started seeing my first specialist, a gyn when I was 13 about the intense pelvic pain I was experiencing. My mother, who never experienced more than 'bad cramps', didn't get what was going on. It felt like a weedwhacker was tearing my uterus apart. I would bleed in excess and pass clots. I would vomit from the pain of the cramping. And yet, it was the 'take 2 tylenol and get over it' attitude I hated the most.
I almost feel sad to admit, but I was a geek. I adored school work and writing essays. Having to miss drama or video production was horror for me. I wanted to be at school for those bits (the other bits like math or science or pe I could happily miss) but I wanted to go to play practice. And yet, it was always, oh Jennifer is an attention seeker and keeping me home was regarded as this generous, excessive and euphoric reward I was being granted and not the kind and caring regard to my pain and my health. There was no humanity in my childhood.
Kids her age don't get pelvic pain. It's growing pains. She'll get over it. She likes the attention and even negative attention is attention.
I didn't get over it. Because there was and is nothing to 'get over'. It's a lifelong commitment, being ill. It will last longer than any friendship, and longer than my own lifetime.
So I saw my first gyn. I was given monthly prescriptions for Vicodin. And it did nothing for me. It was suggested I have a laparoscopy at the age of 14, but my mother said no. I think about the relief I found after my lap in 2003, at the age of 22, and think how much better the previous 8 years could have been.
It wasn't long-lasting, the relief, but it was relief nonetheless. I often question why those of us with adhesions don't get yearly laps, besides the cost and the recovery period.
I had a major kidney infection when I was 15. I had just finished driver's ed and literally, overnight, struck down. The symptoms had been ongoing, but due to the drama caused by me wanting to see a doctor, I ignored it. After 2 ERs, it was found that my right kidney had abscessed.
It took several hours of fluids and kind nurses taking my abuse as they forced the pus from the kidney. That event most likely has paved the way for the recurrent kidney inflammation now. I was in kidney failure.
And I don't want that for my child. Yes, I know how hard it is for you to look at your precious child and imagine the effects of illness. And to admit it to yourself, to other people. I know that people will accuse you of attention seeking, or being mad and off your rocker, but it is worth it to have someone else repeat your fears and worries.
When the paed told me that he suspected that there was arthritis in my daughter's knees, my heart stopped momentarily. I knew what was coming for her. A lifetime of hurt and pain and drugs and sadness. Of limitations and always, always pushing through, but my g-d my heart lifted and I thought, yes! Someone else gets it.
The unresolved pain of my own diagnosis still lingers in me. I think that anger is the force behind my momentum. It powers my satiric nature. It is the power that pushes me through pain, through illness. And I don't want that for her.
I want her force to be fuller. To be brighter. To be of love and confidence and the power of her.
I think, for the most part, the calmness comes because of that simply and easily discarded word: Diagnosis. I got mine. It's my golden ticket. It, all at once, makes me and destroys me. I am finally real. No one can brush me off now. And yet, what an absolutely shitty gift.
I want the same for her. I want her to achieve her golden ticket status early so that we can brush it off and move forward.
I also really want this liver/kidney pain to stop. And knowing that it won't, I open myself up a little more. A little more vulnerable. A little more grey and depressing.
A little more badger.
It takes a lot of effort to remove oneself from a comfy couch and walk to the phone. You'd think, being in the company of one who loves emerging technology, we'd have a portable phone but pshh. Seriously, who uses those things? We have 1 phone jack and an antiquated non-cordless phone.
When the phone rings, it takes a lot to answer it. It's either someone confirming an appointment or someone changing an appointment or someone trying to change my power company. No one ever rings to offer me a million dollars or a chat. Not that I'd be keen on a chat. I'd have to sit on the stairs and that's really uncomfy.
And I'm exactly the same way with my mobile. It's more likely to run out of batteries than be used, though I am trying to get better at texting people. I just enjoy socialising when it's my own decision.
I spent some time this morning trying to pass on and receive messages with my gastro. He's been quite a find, after the first gastro was a complete waste, so I look forward to hearing from him. He is genuinely interested in the TRAPS disease and wants to know more. He also, genuinely, wants to help.
So when he mentioned that he'd try to see me ASAP when symptoms started forming a pattern, I leapt on that. Are you sure?? I asked, aghast that someone was actually taking me seriously. Really? And in my head I'm thinking, pinch me! Pinch me! I'm dreaming!
Last Friday morning, thursday night I guess, I noticed a pinching feeling in the area surrounding my right kidney. It was enough to wake me several times. Ow, I thought. That's not good. But I went on into 'work' and dutifully ignored it.
Saturday morning it was more than a pinch and more than an occasional Ow. It was more of a sustained owwwww but still only coming in periodic waves.
Today, now a week on, it's more of the 'why do I need a kidney and for the love of G-d would you stop' sensation. I rang my GP's office on Monday looking for an appointment. 'You need to ring a week in advance' the woman tells me curtly (as though I plan these things, as you would a teeth cleaning). He can see you 3:15 next Monday. Oh, I say. That's quite a ways away. Take it or leave it she tells me. Yikes! Drives a hard bargain, these headphone equipped women.
So, here we are. It's Friday. It hurts and I see the doctor on Monday. Options available to me are the 'after hours' or accident/emergency variety of doctor. The emergency room (seems a bit OTT, you know?) or wait.
So I rang the Gastro, thinking of his offer. I get put onto his PA, a wonderful and lovely and patient girl. Oh, she says, are you the TRAPS lady? I hate to call you that, she says.
Oh no, I butt in. I've been called worse. It is me and I've got these symptoms and he said he wanted to know when it was happening. Tell him that it's mild now but it's going to get worse and I thought he ought to know.
I like how you're so calm, she says. Like you know it's going to get worse and yet you're so calm.
Well, I think to myself. I've done the panic and cry thing in the past and all I did was upset everyone around me. Besides, it's not going to kill me...yet.
My counselor and I have agreed that I enjoy the art of grim and depressing humour. Not in the Hannibal Lecter sort of way, though I do enjoy a nice Chianti. I still have a couple bottles in the cellar and need to check their drink by dates. (What? Didn't you spend your 20s cellaring imported Italian wines? No?)
I don't know what it is about me, but I have a tendency to deflect situations into some macabre, satiric humour. I read once that comedians are funny because they're brutally honest about their pain and they're ok with it. I think of myself as an excellent comedian. It is how I deflect pain. It's how I degrade myself and it's how I am brutally honest with my own limitations.
And I adore making people laugh. Laughter is a nice way of someone saying they accept you. I don't think people expect it when they meet me. Sitting in a doctor's office and dealing with these concepts and walking away with him laughing is a highlight for me. I've had doctors comment that they adore working with me because we get to be so real and so informal. I also enjoy when they curse.
I once had a GP, who I was very fond of, bang his head on his desk when he realised he was completely overwhelmed with being able to help me and said: Frankly, I should just discharge you because you're too hard. But I like you too much.
And maybe that's the thing. I like that people like me, and I like to make things easier for them. Because life is hard. I know how hard it can be. So a light moment for them and for me is pure gold.
My counselor says it's a self-soothing mechanism that I've taught myself over time. That by somehow finding a spark of humour, I've accepted the bleak, decided I'm over the bleak, and can move on to positive things.
See, I AM positive. It's just my positivity isn't rainbows, bunnies and fluffy. It's decidedly dark, meaty and more Philly Cheesesteak than brown rice and miso.
So when the lovely PA responds that I'm calm despite what's going on, to me it's a non-issue. And I actually sort of thought, well, what would you prefer? Me sobbing on the phone and clutching the ground in agony? But then I thought, omg, maybe I am going to die and I should head her warning and, yeah, nah. Not going to happen.
It gives me mental clarity, the grim Jennifer. It lets me get the crap out of the way and get onto business. It also lightens the load. I don't want your sadness, I'm not pitying myself so let's get to the real business of making me better.
I'm finding it hard to curb the habit though. In front of my daughter, I don't want to joke about her health. I'll joke about her high energy, her inability to sleep before 10pm, but this disease, nope. Not funny. Not to me. I'm a real badger about it.
We're not going to dismiss it. I'm not going to allow you to lessen this illness. I'm not going to allow you to replace your discomfort with a blase attitude. And maybe it makes me appear boring and serious and a real stick in the mud.
I started seeing my first specialist, a gyn when I was 13 about the intense pelvic pain I was experiencing. My mother, who never experienced more than 'bad cramps', didn't get what was going on. It felt like a weedwhacker was tearing my uterus apart. I would bleed in excess and pass clots. I would vomit from the pain of the cramping. And yet, it was the 'take 2 tylenol and get over it' attitude I hated the most.
I almost feel sad to admit, but I was a geek. I adored school work and writing essays. Having to miss drama or video production was horror for me. I wanted to be at school for those bits (the other bits like math or science or pe I could happily miss) but I wanted to go to play practice. And yet, it was always, oh Jennifer is an attention seeker and keeping me home was regarded as this generous, excessive and euphoric reward I was being granted and not the kind and caring regard to my pain and my health. There was no humanity in my childhood.
Kids her age don't get pelvic pain. It's growing pains. She'll get over it. She likes the attention and even negative attention is attention.
I didn't get over it. Because there was and is nothing to 'get over'. It's a lifelong commitment, being ill. It will last longer than any friendship, and longer than my own lifetime.
So I saw my first gyn. I was given monthly prescriptions for Vicodin. And it did nothing for me. It was suggested I have a laparoscopy at the age of 14, but my mother said no. I think about the relief I found after my lap in 2003, at the age of 22, and think how much better the previous 8 years could have been.
It wasn't long-lasting, the relief, but it was relief nonetheless. I often question why those of us with adhesions don't get yearly laps, besides the cost and the recovery period.
I had a major kidney infection when I was 15. I had just finished driver's ed and literally, overnight, struck down. The symptoms had been ongoing, but due to the drama caused by me wanting to see a doctor, I ignored it. After 2 ERs, it was found that my right kidney had abscessed.
It took several hours of fluids and kind nurses taking my abuse as they forced the pus from the kidney. That event most likely has paved the way for the recurrent kidney inflammation now. I was in kidney failure.
And I don't want that for my child. Yes, I know how hard it is for you to look at your precious child and imagine the effects of illness. And to admit it to yourself, to other people. I know that people will accuse you of attention seeking, or being mad and off your rocker, but it is worth it to have someone else repeat your fears and worries.
When the paed told me that he suspected that there was arthritis in my daughter's knees, my heart stopped momentarily. I knew what was coming for her. A lifetime of hurt and pain and drugs and sadness. Of limitations and always, always pushing through, but my g-d my heart lifted and I thought, yes! Someone else gets it.
The unresolved pain of my own diagnosis still lingers in me. I think that anger is the force behind my momentum. It powers my satiric nature. It is the power that pushes me through pain, through illness. And I don't want that for her.
I want her force to be fuller. To be brighter. To be of love and confidence and the power of her.
I think, for the most part, the calmness comes because of that simply and easily discarded word: Diagnosis. I got mine. It's my golden ticket. It, all at once, makes me and destroys me. I am finally real. No one can brush me off now. And yet, what an absolutely shitty gift.
I want the same for her. I want her to achieve her golden ticket status early so that we can brush it off and move forward.
I also really want this liver/kidney pain to stop. And knowing that it won't, I open myself up a little more. A little more vulnerable. A little more grey and depressing.
A little more badger.
Friday, November 12, 2010
What Hurts The Most?
"What hurts the most yields the greatest strength" reads a t-shirt available at Cafepress.com if you search for Neuropathy.
I think it's a fabulous opened ended statement.
Are they talking physical pain? Emotional pain and regret? Psychological pain? Or a cultural stiffness that eventually endures pain?
For me, what hurts the most is my body.
In July and August 2008 we moved from Blenheim and a warm, modern home to a leaky apartment and eventually to the home we live in now. It's cold and draughty. It has no heat, except a couple oil fin heaters we have bought. The wind rips through. It took months to get rid of the dampness and cold. It was a particularly cruel Wellington winter.
And I had yet to be diagnosed with a rare disease. People still thought I was an attention seeking dramatic depressive.
I just hurt.
One morning I woke up so sore I could hardly breathe. As the day wore on, I began to think, if this is it. If this is all I will ever have to live for, I don't want to live. And it was scary. It was a tormenting thought to have. I had an almost 3 year old -- why wasn't she enough to live for?
Wasn't life itself worth living for? It was a horrible internal battle. My desire to live was strong but the pain itself was so horrid that death seemed like a warm embrace, a deserved win.
I went to my GP after a 2 day internal battle and told him. If this is all I have to live for, I don't want to live. This was when we first looked into Cox-2 Inhibitors. He had some Celebrex hanging around and gave me 7 boxes that had expired by a few months. (Not that they *really* ever expire, he said.) I was so grateful. The drug can be terribly expensive. We raised my steroid and I took some oxynorm and tramadol together. It wasn't what I needed to beat the pain monster but at least I didn't want to die anymore.
He also referred me to the mental health service. I think he realized that it wasn't going to touch the pain and I might become suicidal again. I met with them and my intake was exactly as you'd imagine. I've never been a risk to anyone else, just myself, but only when the pain is so extreme death seems welcome.
They really did seem to get how bad the pain was. They encouraged me to push for a pain clinic assessment. 'Someone must be able to do something for you!' they quipped. (The short answer is no.)
I think it was the steroid more than anything that helped. And it did get better, as it does.
The pain for me cycles in flares. Some days I hardly wonder what the fuss is about and then there are days where simple muscle flexes make me want to howl with pain and the electric shocks are awful.
Today, for example, my fingers hurt. My hands hurt, my arms up to the elbow hurts. My legs under the knee hurts. Moving them is agony. Cutting, writing, brushing my hair or teeth is totally out of the question. Carrying dishes is a disaster because it can all change in a split second. Boom, my hand will open, and crash! The dish that was held so automatically and expertly goes crashing to the ground.
I will never use good dishes as daily dishes for that very reason. I have personally destroyed an entire dinner set. Some of my favourite mugs have been lost to this.
My legs feel as though they are bolted to the ground. Picking them up feels almost like marching and I am directed to memories of elephants marching, trunk holding tail. My mental image is of my heavy elephant leg lifting up, pushing down, lifting up, pushing down. It's almost as though I must tell myself how to walk to get these beasts to work.
Stairs are a laughing matter. There's no way these legs will lift high enough to clear a step and yet, you must. Life doesn't stop because you can't climb the stairs. Especially in a world of 2-story houses built long before anyone recognized arthritis.
I will often be sitting, waiting for pain killers to kick in, when I feel the electric shocks hit my spine or my arms. The burning in my legs is agonizing at times. I used to be ashamed to cry in pain. Most of the time I'm alone when it happens so I don't mind going with it. But when other people are around I try not to.
I try to hide it as much as I can, but there are some days when it just hurts so much I hate life and I hate everything and I just want to stop hurting. My daughter is getting better at understanding it's not her, or anything really, it's just that mummy hurts and mummy needs to let it out. But it used to really upset her.
So I would find myself stuck on the floor, in agony, crying with an equally distressed toddler crying too.
Nothing ever really helps. Heat, cold, pain killers. I find that there will be days of warning -- increasingly sore muscles. Sore joints and fatigue. Headaches. Trouble sleeping and eventually it will hit.
It's often when I have a lot going on and so I will email people: "Fingers hurt. reply later, ok?" whether or not ok is a satisfactory answer for them. Sometimes I can push through and my fingers will ache and swell and once I nearly burnt the house down trying to prepare meals in this state.
I turned the wrong element on and went to sit down, exhausted from chopping and feeling fatigued. We had moved the toaster to the stove so it was easier for me to operate and boom! Up in flames went the toaster. If I had fallen asleep or been unable to move to extinguish the fire, we would have suffered far more damage. Thankfully the only damage was smoke induced and a burnt element and ruined toaster.
People often suggest we get home help during these times. The problem is many folded. For one, you never know when it will occur. You can't afford that sort of help anyways ($26 + an hour) and people expect you just to 'harden up' and get on with it. And I've tried and I do. But most often, it's hard, I hurt and it made me very, very angry on the inside.
When I explained the anger to the psych consult, they suggested I do some anger management courses. Oh, how I laughed. I don't have an anger problem I told them. I most certainly did. I also had a problem with accepting this was my life. I was still clinging stubbornly to the belief that I was going to get better.
It wasn't until this year when the gene tests returned that I realized I am *never* 'going to get better'. You can't change who are at a genetic level. All I can pray for is relief from the pain and the drug Anakinra to work.
I think that helped immensely. As did the anger management classes. I eventually went to them, in March of 2010 instead of Sept 2009. They taught me that I didn't have the social upbringing to deal with the emotions I was feeling.
It helps to write about the pain. Constant pain really does your head in. People often comment: G-d I can't handle it when I get a headache! I can't imagine weeks of this pain!
And that's how it is. The pain will rise and fall in cycles, it will cancel plans, create chaos and hassles. You have to make excuses and find alternatives. People won't understand or if they do, they are so kind and wonderful you wish all people were like them. Someone will bitch at you and someone will bring you a casserole. You're constantly challenged by the pain -- your own reactions, your ability to self-care or self-hate.
Life goes on and doesn't stop. The pain will eventually go away. You're left exhausted and hurt. Once the pain is gone, it takes days to rebuild from the exhaustion and flush out all the shitty drugs you've had to pump yourself full of.
When people recover from an illness with antibiotics you often hear people say -- oh, it takes it out of you. Takes weeks to get over those terrible antibiotics. But you never hear, oh, that awful oxynorm. Takes weeks to get those drugs out of your system! Insert with tramadol, morphine, meloxicam.
I recently overheard a discussion in which two people were discussing a third party using a lot of paracetemol. And how taking lots of pain killers was a blight on society. I had to laugh. Paracetemol?! Mwah ha ha. How I wish I was one of those people who never needed anything and considered it a last resort.
I think I've actually got an incredibly high pain tolerance. It's how I get on with life. I shop. I cook. I mend and sew. I create and paint and play Barbies. I parent very well. I've done charity work.
I hurt but I carry on.
I was told the other day that you'd 'never know' anything was up with me. Sigh, I think on the inside. I wish I went purple. Or had stripes. Or big fins. Even a big fish head. I responded that I walk slower than most people. And take time with things because I have to think very slowly to make sure I'm not making social mistakes.
I was grateful that these people asked about my illness and I got to tell them more. I was grateful for their empathy and for their kind words about how well I carry myself.
I guess that's another way the illness hurts.
If I want to lie down on the floor and sob and openly express my emotions about it all, am I not carrying myself very well? Am I doing a disservice to myself or others with chronic illness by not carrying myself well?
My daughter seems to struggle with it at the moment. She wants me to be a willing participant in her play and I am finding it hard to explain to hurt what it means when I say 'Mummy hurts'. I've tried to explain that I only have certain amounts of energy. She hasn't quite grasped that mental energy is different to physical energy and I have limited amounts of both.
I feel immense dimensions of guilt.
For not bringing in an income. For costing my family money. For having to bail out of social events. People don't get that. They think you're a flake or just finding any old excuse to not go out.
That causes guilt too. If they'd just ask -- are you avoiding me or do you really hurt they'd get so much more knowledge and no one would get hurt feelings.
People are biased by illness. They either find you a bludger or have bad memories of someone else with illness. Maybe illness killed off someone they loved desperately and you remind them of that pain. Not many people choose to let you tell your own story.
That hurts too.
It hurts to hurt.
I remember once a nurse told me to pray for pain relief. "It can't hurt" she said, not knowing the pun. Oh how I wanted to point it out but didn't. I didn't want to appear sacrilegious.
”The greatest evil is physical pain.” – St. Augustine
Oddly enough, nothing has taken away the pain. Not even prayer. As much as I had hoped a good word with the big man upstairs was going to help, I wasn't really surprised.
Today, my arms hurt. My fingers ache. My legs burn. I trip over my heavy elephant feet. I am tired and plagued with exhaustion. But I have promised a trip to the beach and a plate of hot chips. I have to pack to catch a flight tomorrow and it's overwhelming.
This is when I actually use prayer. Lord, I say, please grant me the patience and the endurance to get through today. To hold my tongue and to love my daughter unconditionally.
It's one of those days when I say: Everything hurts.
It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience. -- Julius Caesar
I think it's a fabulous opened ended statement.
Are they talking physical pain? Emotional pain and regret? Psychological pain? Or a cultural stiffness that eventually endures pain?
For me, what hurts the most is my body.
In July and August 2008 we moved from Blenheim and a warm, modern home to a leaky apartment and eventually to the home we live in now. It's cold and draughty. It has no heat, except a couple oil fin heaters we have bought. The wind rips through. It took months to get rid of the dampness and cold. It was a particularly cruel Wellington winter.
And I had yet to be diagnosed with a rare disease. People still thought I was an attention seeking dramatic depressive.
I just hurt.
One morning I woke up so sore I could hardly breathe. As the day wore on, I began to think, if this is it. If this is all I will ever have to live for, I don't want to live. And it was scary. It was a tormenting thought to have. I had an almost 3 year old -- why wasn't she enough to live for?
Wasn't life itself worth living for? It was a horrible internal battle. My desire to live was strong but the pain itself was so horrid that death seemed like a warm embrace, a deserved win.
I went to my GP after a 2 day internal battle and told him. If this is all I have to live for, I don't want to live. This was when we first looked into Cox-2 Inhibitors. He had some Celebrex hanging around and gave me 7 boxes that had expired by a few months. (Not that they *really* ever expire, he said.) I was so grateful. The drug can be terribly expensive. We raised my steroid and I took some oxynorm and tramadol together. It wasn't what I needed to beat the pain monster but at least I didn't want to die anymore.
He also referred me to the mental health service. I think he realized that it wasn't going to touch the pain and I might become suicidal again. I met with them and my intake was exactly as you'd imagine. I've never been a risk to anyone else, just myself, but only when the pain is so extreme death seems welcome.
They really did seem to get how bad the pain was. They encouraged me to push for a pain clinic assessment. 'Someone must be able to do something for you!' they quipped. (The short answer is no.)
I think it was the steroid more than anything that helped. And it did get better, as it does.
The pain for me cycles in flares. Some days I hardly wonder what the fuss is about and then there are days where simple muscle flexes make me want to howl with pain and the electric shocks are awful.
Today, for example, my fingers hurt. My hands hurt, my arms up to the elbow hurts. My legs under the knee hurts. Moving them is agony. Cutting, writing, brushing my hair or teeth is totally out of the question. Carrying dishes is a disaster because it can all change in a split second. Boom, my hand will open, and crash! The dish that was held so automatically and expertly goes crashing to the ground.
I will never use good dishes as daily dishes for that very reason. I have personally destroyed an entire dinner set. Some of my favourite mugs have been lost to this.
My legs feel as though they are bolted to the ground. Picking them up feels almost like marching and I am directed to memories of elephants marching, trunk holding tail. My mental image is of my heavy elephant leg lifting up, pushing down, lifting up, pushing down. It's almost as though I must tell myself how to walk to get these beasts to work.
Stairs are a laughing matter. There's no way these legs will lift high enough to clear a step and yet, you must. Life doesn't stop because you can't climb the stairs. Especially in a world of 2-story houses built long before anyone recognized arthritis.
I will often be sitting, waiting for pain killers to kick in, when I feel the electric shocks hit my spine or my arms. The burning in my legs is agonizing at times. I used to be ashamed to cry in pain. Most of the time I'm alone when it happens so I don't mind going with it. But when other people are around I try not to.
I try to hide it as much as I can, but there are some days when it just hurts so much I hate life and I hate everything and I just want to stop hurting. My daughter is getting better at understanding it's not her, or anything really, it's just that mummy hurts and mummy needs to let it out. But it used to really upset her.
So I would find myself stuck on the floor, in agony, crying with an equally distressed toddler crying too.
Nothing ever really helps. Heat, cold, pain killers. I find that there will be days of warning -- increasingly sore muscles. Sore joints and fatigue. Headaches. Trouble sleeping and eventually it will hit.
It's often when I have a lot going on and so I will email people: "Fingers hurt. reply later, ok?" whether or not ok is a satisfactory answer for them. Sometimes I can push through and my fingers will ache and swell and once I nearly burnt the house down trying to prepare meals in this state.
I turned the wrong element on and went to sit down, exhausted from chopping and feeling fatigued. We had moved the toaster to the stove so it was easier for me to operate and boom! Up in flames went the toaster. If I had fallen asleep or been unable to move to extinguish the fire, we would have suffered far more damage. Thankfully the only damage was smoke induced and a burnt element and ruined toaster.
People often suggest we get home help during these times. The problem is many folded. For one, you never know when it will occur. You can't afford that sort of help anyways ($26 + an hour) and people expect you just to 'harden up' and get on with it. And I've tried and I do. But most often, it's hard, I hurt and it made me very, very angry on the inside.
When I explained the anger to the psych consult, they suggested I do some anger management courses. Oh, how I laughed. I don't have an anger problem I told them. I most certainly did. I also had a problem with accepting this was my life. I was still clinging stubbornly to the belief that I was going to get better.
It wasn't until this year when the gene tests returned that I realized I am *never* 'going to get better'. You can't change who are at a genetic level. All I can pray for is relief from the pain and the drug Anakinra to work.
I think that helped immensely. As did the anger management classes. I eventually went to them, in March of 2010 instead of Sept 2009. They taught me that I didn't have the social upbringing to deal with the emotions I was feeling.
It helps to write about the pain. Constant pain really does your head in. People often comment: G-d I can't handle it when I get a headache! I can't imagine weeks of this pain!
And that's how it is. The pain will rise and fall in cycles, it will cancel plans, create chaos and hassles. You have to make excuses and find alternatives. People won't understand or if they do, they are so kind and wonderful you wish all people were like them. Someone will bitch at you and someone will bring you a casserole. You're constantly challenged by the pain -- your own reactions, your ability to self-care or self-hate.
Life goes on and doesn't stop. The pain will eventually go away. You're left exhausted and hurt. Once the pain is gone, it takes days to rebuild from the exhaustion and flush out all the shitty drugs you've had to pump yourself full of.
When people recover from an illness with antibiotics you often hear people say -- oh, it takes it out of you. Takes weeks to get over those terrible antibiotics. But you never hear, oh, that awful oxynorm. Takes weeks to get those drugs out of your system! Insert with tramadol, morphine, meloxicam.
I recently overheard a discussion in which two people were discussing a third party using a lot of paracetemol. And how taking lots of pain killers was a blight on society. I had to laugh. Paracetemol?! Mwah ha ha. How I wish I was one of those people who never needed anything and considered it a last resort.
I think I've actually got an incredibly high pain tolerance. It's how I get on with life. I shop. I cook. I mend and sew. I create and paint and play Barbies. I parent very well. I've done charity work.
I hurt but I carry on.
I was told the other day that you'd 'never know' anything was up with me. Sigh, I think on the inside. I wish I went purple. Or had stripes. Or big fins. Even a big fish head. I responded that I walk slower than most people. And take time with things because I have to think very slowly to make sure I'm not making social mistakes.
I was grateful that these people asked about my illness and I got to tell them more. I was grateful for their empathy and for their kind words about how well I carry myself.
I guess that's another way the illness hurts.
If I want to lie down on the floor and sob and openly express my emotions about it all, am I not carrying myself very well? Am I doing a disservice to myself or others with chronic illness by not carrying myself well?
My daughter seems to struggle with it at the moment. She wants me to be a willing participant in her play and I am finding it hard to explain to hurt what it means when I say 'Mummy hurts'. I've tried to explain that I only have certain amounts of energy. She hasn't quite grasped that mental energy is different to physical energy and I have limited amounts of both.
I feel immense dimensions of guilt.
For not bringing in an income. For costing my family money. For having to bail out of social events. People don't get that. They think you're a flake or just finding any old excuse to not go out.
That causes guilt too. If they'd just ask -- are you avoiding me or do you really hurt they'd get so much more knowledge and no one would get hurt feelings.
People are biased by illness. They either find you a bludger or have bad memories of someone else with illness. Maybe illness killed off someone they loved desperately and you remind them of that pain. Not many people choose to let you tell your own story.
That hurts too.
It hurts to hurt.
I remember once a nurse told me to pray for pain relief. "It can't hurt" she said, not knowing the pun. Oh how I wanted to point it out but didn't. I didn't want to appear sacrilegious.
”The greatest evil is physical pain.” – St. Augustine
Oddly enough, nothing has taken away the pain. Not even prayer. As much as I had hoped a good word with the big man upstairs was going to help, I wasn't really surprised.
Today, my arms hurt. My fingers ache. My legs burn. I trip over my heavy elephant feet. I am tired and plagued with exhaustion. But I have promised a trip to the beach and a plate of hot chips. I have to pack to catch a flight tomorrow and it's overwhelming.
This is when I actually use prayer. Lord, I say, please grant me the patience and the endurance to get through today. To hold my tongue and to love my daughter unconditionally.
It's one of those days when I say: Everything hurts.
It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience. -- Julius Caesar
About Me
- Jen
- I'm Jen and this is my blog. I'll take you through my diagnosis and life with an incurable illness. In 2008 I was diagnosed with Familial Mediterranean Fever but in July 2010 I was diagnosed with Tumour Necrosis Factor alpha Receptor Associated Periodic Syndrome. (google Familial Hibernian Fever) I'd really like to work as a fertility educator or an arthritis educator. I enjoy baking, trying to find 'good' Mexican food in NZ and my dream is to vacation in Tahiti. I'd trade money for Sleep, cats and warm weather.
On Your Diagnosis Journey?
Start Here.
The Spoon Theory
* An Open Letter To Those Without Invisible Disability Or Chronic Illness
* You're Not Lazy, You're Sick
Lab Tests
* Autoimmune Disease Tests
* Autoimmune Labs 101
* Lab Tests Online (AU)
* University of Washington
* Pediatric Rheumatology
* ANA Test
* Autoimmune Lab Tests
* Laboratory Diagnosis
* Wrong Diagnosis
* Lab Tests Online
* Immco Diagnostics
Familial Hibernian Fever
* Wikipedia
* Traps
* In Children
* Patient Experiences
* NCBI
* The Cleveland Clinic
* Gene Dx
* Healthy Parent
* Q J Medical Journal
* British Medical Journal
* Anaesthetist.com
* NIAMS
* Wrong Diagnosis
* Cigna
* John Hopkins
* Arthritis Research
* TRAPS PDF
Familial Mediterranean Fever
* A good FMF Resource
* FMF -- Definitions
* Children's Health
* FMF from State University
Autoinflammatory Diseases
* British Medical Journal PDF
* Medscape
* NIH News
* Cell.com
* Autoinflammatory vs Autoimmune
Lupus
* Lupus UK
* Medicine Net
* Kid's Health
* Web MD
* UK Lupus
* Mayo Clinic
* Wikipedia
* Lupus Foundation of America
* Lupus Lab Results
Lyme Disease
* Igenex Lab -- Start Here
* Under Our Skin
* Diagnosis & Testing
* How to find a LLMD
* Finding a Doctor
* eHow.com Find a LLMD
* Lyme Disease Resource
* Linda's Lyme Disease Journal
Rheumatoid Arthritis
* Wikipedia
* Medicine Net
* Arthritis Foundation
* Mayo Clinic
* National Rheumatoid Arthritis Society
* WebMD
Still's Disease
* Still's Disease PDF
* International Still's Disease Foundation
* Medicine Net
* Wikipedia
* Mayo Clinic
* Medline Plus
* Arthritis Insight
* Arthritis Foundation
* About.com
Genetic Diseases
* Medicine Net
* Wikepedia
* Genomics
* Genetic Disease Foundation
* Medline Plus
Chronic Illness & Emotions
* Coping with Persistent Pain PDF
* Chronic Pain & Depression
* Managing Pain
* Chronic Illness Coach
* Cognition, Emotion & Chronic Illness
* Rest Ministries
* Living with Chronic Illness
* Understanding Emotions & Chronic Illness
* The Many Emotions of Chronic Arthritis
* Coping with Chronic Illness
* Illness & Anger
* Emotions of Chronic Fatigue
* Dealing with a Health Condition
* Emotions of Chronic Pain Management
* Experiencing & Expressing Emotions
* Self-Esteem for People with Disabilities
* Understanding & Treating Depression
* When is Anger a Problem?
* Expressing Anger?
* Overcoming Anger & Aggression
* Relaxaction
* Relaxation Audio Files
* How Counseling Helps
* Affirmations for Building Self-Esteem
* Understanding Emotional Responses
* Grief & Grieving
* Dr. Bob's Online Pamphlet Collection
Nutritional Support
* Anti-Inflammatory Herbs
Safety of Commonly Prescribed Drugs
* NSAIDs & Stomach Pain
Other Reads
* What is Heartbreak?
* Twin Loss NZ
* International Baby Lost Mother's Day
* The Pregnant Chicken
Memes
* Infertile Panda
* Chronic Illness Cat
Start Here.
The Spoon Theory* An Open Letter To Those Without Invisible Disability Or Chronic Illness
* You're Not Lazy, You're Sick
Lab Tests
* Autoimmune Disease Tests
* Autoimmune Labs 101
* Lab Tests Online (AU)
* University of Washington
* Pediatric Rheumatology
* ANA Test
* Autoimmune Lab Tests
* Laboratory Diagnosis
* Wrong Diagnosis
* Lab Tests Online
* Immco Diagnostics
Familial Hibernian Fever
* Wikipedia
* Traps
* In Children
* Patient Experiences
* NCBI
* The Cleveland Clinic
* Gene Dx
* Healthy Parent
* Q J Medical Journal
* British Medical Journal
* Anaesthetist.com
* NIAMS
* Wrong Diagnosis
* Cigna
* John Hopkins
* Arthritis Research
* TRAPS PDF
Familial Mediterranean Fever
* A good FMF Resource
* FMF -- Definitions
* Children's Health
* FMF from State University
Autoinflammatory Diseases
* British Medical Journal PDF
* Medscape
* NIH News
* Cell.com
* Autoinflammatory vs Autoimmune
Lupus
* Lupus UK
* Medicine Net
* Kid's Health
* Web MD
* UK Lupus
* Mayo Clinic
* Wikipedia
* Lupus Foundation of America
* Lupus Lab Results
Lyme Disease
* Igenex Lab -- Start Here
* Under Our Skin
* Diagnosis & Testing
* How to find a LLMD
* Finding a Doctor
* eHow.com Find a LLMD
* Lyme Disease Resource
* Linda's Lyme Disease Journal
Rheumatoid Arthritis
* Wikipedia
* Medicine Net
* Arthritis Foundation
* Mayo Clinic
* National Rheumatoid Arthritis Society
* WebMD
Still's Disease
* Still's Disease PDF
* International Still's Disease Foundation
* Medicine Net
* Wikipedia
* Mayo Clinic
* Medline Plus
* Arthritis Insight
* Arthritis Foundation
* About.com
Genetic Diseases
* Medicine Net
* Wikepedia
* Genomics
* Genetic Disease Foundation
* Medline Plus
Chronic Illness & Emotions
* Coping with Persistent Pain PDF
* Chronic Pain & Depression
* Managing Pain
* Chronic Illness Coach
* Cognition, Emotion & Chronic Illness
* Rest Ministries
* Living with Chronic Illness
* Understanding Emotions & Chronic Illness
* The Many Emotions of Chronic Arthritis
* Coping with Chronic Illness
* Illness & Anger
* Emotions of Chronic Fatigue
* Dealing with a Health Condition
* Emotions of Chronic Pain Management
* Experiencing & Expressing Emotions
* Self-Esteem for People with Disabilities
* Understanding & Treating Depression
* When is Anger a Problem?
* Expressing Anger?
* Overcoming Anger & Aggression
* Relaxaction
* Relaxation Audio Files
* How Counseling Helps
* Affirmations for Building Self-Esteem
* Understanding Emotional Responses
* Grief & Grieving
* Dr. Bob's Online Pamphlet Collection
Nutritional Support
* Anti-Inflammatory Herbs
Safety of Commonly Prescribed Drugs
* NSAIDs & Stomach Pain
Other Reads
* What is Heartbreak?
* Twin Loss NZ
* International Baby Lost Mother's Day
* The Pregnant Chicken
Memes
* Infertile Panda
* Chronic Illness Cat
