Thursday, October 27, 2011

Maximum Tolerated Dose or How I'm an Idiot

So, I saw a GP I like Wed night about my hip, which is so, so sore. All she could relate is that it is a soft-tissue issue, there is no sign of osteoarthritis and that I need an MRI. And, unless I can get a referral, we will have to wait the obligatory x number of weeks until I qualify for either the rheum or a bone doctor to refer me. I logically understand that policy makers have to be fair and just but dude, it hurts.

I asked about all sorts of things. What about over the counter joint supplements -- no real data on them being effective. What about going on an immunosuppresie, well, it would work to dampen down inflammation, but really only in the joints and you need a rheum to write the script. What about pain killers?

This is when I admitted, "I'm exceeding the 8 a day I'm allowed." She said, "Wait! 8 of what? Paracetemol?" I said: "No, no! The voltaren!"

She got this look in her eyes and said, "But you're only allowed 3 a day!! How long have you taken that dose?" I shrugged. Not often. I took about 8 the night I fell, but over a 24 hour period after I fell. And occasionally 4 or 5.

It's just NOT effective in combating the pain that I feel when I need to be mum who drives, get groceries, hangs clothes out, cook, etc.

She asked what else I'm taking it with. Mostly ibuprofen. And occasionally the trifecta of voltaren, ibuprofen and tramadol.

She said that if that doesn't control the pain then something must be going on in there.

But I still have to wait the x weeks (I can't remember if it's 12 or 16) to get a referral to either the rheum or bone doctor.

Of course, I could PAY to see a specialist, but this close to xmas? They all start going on leave in late Nov.

So, my plan is to wait until Monday and ring the rheum's office and ask for the nurse. The odds of ever getting the nurse are 1 in 10, but she does get notes to Will. I'll explain that I need to wait x weeks until the GP will refer to Will, but can I just be a dork and ask for him by myself?

I've got physio booked for 14 Dec if that gives you an idea of how long it takes.

So, when we got home I started looking up the max dose for Voltaren on the packaging. Now, my voltaren comes as diclofenac sodium in a brown pill can with a twist off lid. It's not child-proof and it simply says: "Diclofenac sodium, 50mg" and advises me to take 1 tablet 3 times a day.

I had to go dig in my emergency box to find a proper voltaren box. In the pamphelet, it reads that you are to take 1 tablet 3 times a day and that some women experience relief from dysmennorhea by taking 4 tablets or 200mg a day.

That is it.

It doesn't say: Hey Moron!! Yes, you there! Take this but only 3 tablets a day or 150mg. That's it!

I suppose because my pain is bad and I like taking things that I can drive on, I didn't even think about maximum doses. Especially since I took more than 4 on occasions where there was tremendous pain but I didn't want to bother going to the ED or after hours.

It was stupid, yes, I get that. But, to be fair, when you hurt, you don't actually think logically, and when you've got a million things to do and it helps, you forget about safety or maximum tolerated doses. I suppose because it's not an addictive substance there is less notice about doses.

This is not the leaflet I have, but a similar one on voltaren: here

But, I've made myself a note with all the limits on it so I can reference it in the future.

I'm now going to try the voltaren with the codalgin I have to see if we can create a blanket effect once I get my blood plasma levels up with the paracetemol.

Thus far there is very little pain relief and it hurts. A lot. I hate it.

I went to get Sophie yesterday and it was raining heaps and very cold. I waited just outside her classroom and when they came out to get their backpacks, they started with the questions. Sophie's Mum, why do you have crutches.

As I'm answering them, 2 little monsters start swinging their backpacks at my right crutch. Which hits my hip. I felt like lightening bolts were hitting me. I had to actually STOP them from hitting the crutches and tell them that is NOT ok behaviour.

Yeah, they're 5 but come on.

One little boy went to hit a friend's kid and the friend's kid hit him back. The force pushed him into my left crutch and he whines: You hurt me!

I was so peeved.

Today was better. I avoided the backpack getting and went into the classroom. A lot of them starting asking, "What happened?!" and I just said that there is something very sore in my thigh that won't let me bend so I need my sticks.

One little boy said: "I think it's cool. If you need to hurt someone, you can!!" Another little boy chimed in: "Yeah, that'd be awesome!!"

So, I feel a bit better about the stick.

I said I was going to dress it up like a broomstick for Halloween and they decided that would mean I could fly.

My hip is quite sore and sitting is becoming harder and harder.

When you sit, you relax into the surface. That relaxing movement gives me the worst pain, so when you need to pee, you get this urgency to go to the loo. But when you sit and engage those muscle to pee, you get hit with this pain and the pee sort of stops mid-flow and it's all so awkward trying to start/stop with the pain and moving your hips into different angles.

It takes Pee-Pee Dance to a new level.

Kiwis don't really celebrate Halloween, so we'll be joining other expats this weekend to celebrate. It should be good fun, stick included.

Tuesday, October 25, 2011

If You're On Prednisone, You NEED a medic alert bracelet

I was reading about prednisone last night, of course, because I am a geek. And one of the best resource I read about was
All About Prednisone
by Robert D. Fusco, M.D.

One of the things that stuck with me the most last night was that if you are on a steroid treatment of 4 weeks or more, you have become adrenal sufficient and NEED a medic alert type bracelet and wallet card.

I've been on the steroid for almost 4.5 years and NO ONE has mentioned this to me!!

In the event of an emergency when no one can contact someone you know and love, you can slip into an adrenal crisis and no one will know what is triggering the symptoms.

This kinda sorta freaked me out.

Especially for those of us who have been on 40+ mg a day (often twice a day) for weeks at a time.

And the point was made that when you are weaning off Prednisone, you need more care and alert because your body is stressed from the wean, so should you become acutely ill or injured, you will need to increase the dose.

What?!

Why has NO ONE ever mentioned this? I was told to consider a medic alert bracelet for my sulfa drug allergy and/or chronic health woes, but no one mentioned prednisone or adrenal insufficiency.

Yikes.

The medal bracelet has never appealed to me because here you need a letter from your doctor, you then need to buy the bracelet and then pay the monthly fee for your medic alert bracelet. Hence why I never have bothered.

After reading the articles about Predisone and the need for overall awareness of the adrenal issues following injury or illness, I panicked. Google lead me to Mediband which can be bought off the website or in pharmacies in the US.

It's an amazing product! You can get a band in which you write on it, soak it in water and it will never rub off! Or you can get the pre-made bands alerting issues.

Much hipper, cooler and no monthly subscription fee.

They also sell a wallet card, though you can easily make your own.

A point on the site was made that you can wear the bracelets in hospital as they are NOT metal and it can help alert nurses and doctors of facts they may overlook.

As someone who was given sulfa drugs while wearing a bright orange band alerting the doctor to look at my file, being able to sport a bracelet featuring the words Sulfa Drug allergy may have prevented so much damage.

I am contacting them to make a Sulfa Drug allergy bracelet in their allergy style.



If you would like a steroid dependent and adrenal insufficiency bracelet, you can get it here.

Affordable. Bright. Attention Getting. Get Yours soon.

They also have a Facebook Page. Go like them now and ask any questions you may have.

The fantastic KirBir has a suggestion for you all:

There are others for sale from places like Walgreens which are like USB sticks in a bracelet, don't require a doctor's note, and are a little more discrete than those bright ones - http://www.walgreens.com/store/c/care-medical-history-bracelet-medium/ID=prod6016508-product?V=G&ext=frgl_Google_Medicines_&_Treatments

Or more stylish ones: http://www.stickyj.com/zy2068.html


A USB stick in the bracelet!? I'm getting one the next time Matt is in the US.

Now you really have NO excuse not to bling yourself up. It could save your life.

Monday, October 24, 2011

Predni-Oh nooo-sone

In November I'm going to 'celebrate' my 4.5 year Prednisone anniversary. And by celebrate I mean commiserate on the fact that I'm *still* taking it. And don't have twin 4 year old little girls. And haven't gotten well enough to write the next chapter of my life.

I started the drug at a fairly high dose and those first two weeks were like a dream. You would never have known I was sick. I felt so good my then GP told me to drop off the drug. That was mistake #1, I should have weaned.

I woke up unable to uncurl my hands (again!) and unable to bear weight on my legs. But, it was worse because it HURT all over. I now know that was the body's reaction to weaning immediately from a high cortisone supplement. It feels like you're wringing out a wet cloth. That twisting and burning is in your muscles.

So, that began my continuous supplementation. I've been on all kinds of doses, all kinds of methods (injection being the least favourable) and weaned more times that I care to count.

I'm currently sitting at 5mg and the desire not to wean is so strong I refuse to raise the dose to help this hip. Not gonna do it.

One of the side effects that gets mentioned but doesn't really gain much notice is the small infection abundance. Everyone knows Prednisone lowers your immunity and you get sick more often, but you also get icky infections.

My toes are a bit of a mess to begin with in that they grow nail that don't stop at the sides of my toes and that creates little nicks and pain. I manage by clipping the nails.

I noticed a little lump on the side of my big toe. It didn't hurt so I thought it was bit of excess skin or nail.

I got more curious as the days passed and got some tweezers in there to discover that the lump was a little well of green pus. I cleaned it out and gave it a thorough washing with soap and water.

As the days went on, the skin started pulling back and so I got the tweezers again. This time, the skin peeled away, removing nail with it. Suddenly, there was no skin, no nail and no nail bed. Just big, raw, red toe!

Eeek! I cleaned it, I wrapped it, it hurt!

I took Soph to the beach a couple weeks ago to help with her cough and walked around in the salt water. But that evening more nail came off. There was some nail bed there at least.

In the morning the rest of the nail was completely hanging off and there was green everywhere. I kept it clean and dried and when I saw the GP about my hip, I showed him my toe. Oh, he said. Yes, you get things like this on Prednisone.

Small infections that come about with delayed healing. Nothing big, and the nail bed will regrow.

I got some fancy antibiotic oil based ointment that took care of the infection, but the healing is slooooooow. The cuticle finally fell off this morning. It was hard and stiff like old fashioned plastic.

I think it will be a while before I get to have stylish, colourful toes for summer.

http://prednisonesupport.tumblr.com/ is a new micro blog for people to share their experiences on Prednisone. Mine hasn't been too bad, really.

This is my first slow healing infection in 4.5 years and it's probably been my best year on the drug in the whole run.

It can be managed, life on prednisone, and while it's not considered the best option, you can live on the drug long-term.

Once you find a stable dose, stay there. That rollercoaster of highs and weaning is so hard. And it hurts. If you don't want to raise your dose, you don't always have to. Doctors have NO idea what weaning down is like, so make sure you advocate to your best ability, however, there will come a time when you have to, irregardless of your feelings about it.

Sunday, October 23, 2011

Into The Sticks

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.

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.

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.

Sunday, October 16, 2011

Remembrance/Memory Candles

I've had quite a few search requests for 'miscarriage candles' and so I thought I'd post a few links to help your search.



Your first stop should be My Crafty Candles who have at least 9 options, including a graveside option for parents.

Other options include:

* Baby Loss and Miscarriage Comfort Gift Candle Price: $15.95

* Light of My Heart Baby Loss Candles Gift Bag Price: $14.95

* Extra Large Personalised Memorial Candle - Stillbirth / Baby Loss / SIDS / Miscarriage Price: £21.99

* Mini Personalised Memorial Candle - Stillbirth / Baby Loss / SIDS / Miscarriage Price: £2.99

* Baby Loss / Child / Miscarriage / SIDS Butterfly Memorial Candle Price: £9.99

* Remembering You Comfort Candle Remembering You Comfort Candle Price: $19.99

* In Loving Memory Comfort Candle Price: $21.99

* http://www.planetgiftbaskets.com/Cherished-Memories-Candle-Holder-p/cmch.htmCherished Memories Candle Holder Price: $25.00

* Memory Of Life Candle & Holder Price: $29.00

* Personalised Candle Angel Baby Loss 3" Price: £4.99

* Lighttp://www.earthmamaangelbaby.com/baby-loss-comfort/light-of-my-heart-gift-set.htmlht Of My Heart Candle Price: $14.95

* Make a Memorial Candle

* For those of you in the .ie area

* Queen Anne Purple Swarovski Crystal Memorial Candle $50.00

* Hydrangea Pearl Purple Memorial Candle $33.99

* Purple Swarovski Crystal Memorial Candle $37.99

* Swarovski Crystal Memory Candles from $38

* Memorial Expression Candles from $36

* Swarovski Lace Memorial Candles from $36

* Queen Anne Memorial Candles from $36

* Footprints Candle baby loss candle angel baby memorial candle £19.99

Or, if you'd like to make your own:

* Love to Know Candle Guide

* Care 2.com Guide







Memorial Jewelry

* La Belle Dame

* Alexandra's Angel Gifts

* Hope Angel Bracelets

* Big & Chunky Jewelry Co

* Metal Stamped Memories

* BugaBoo Jewelry

* My Forever Child

If you want to support the handmade industry, please visit this Etsy category:

Miscarriage & Remembrance Jewelry

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...

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.

But at some point, grief can morph into depression and that can make your physical illness worse.
-- Dr. Elvira Aletta

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):

Monday, October 10, 2011

Miscarriage and Baby Loss

October 15th is the official day for Baby loss Awareness and Remembrance. So, I hope you will take part by lighting a candle at 7pm for those who have and ultimately will lose pregnancies.



No One Expects to Miscarry

I was 21 when I had my first miscarriage. I was hugely surprised to be pregnant and was just as surprised when I miscarried. No one expects to miscarry.

After your first miscarriage, you begin to worry you will miscarry again. And, when you are predisposed to miscarriage, you suspect you will miscarry, and while you fervently pray it won't happen, you never expect it. You can sense it coming, but it is impossible to predict.

I have experienced miscarriage, and my predisposition is either from PCOS or because of the auto-inflammatory nature of Traps. It's taken me since May to put this together, so I hope it helps someone out there turning to Google for answers.

How often does pregnancy loss occur?

A woman's chance of miscarriage increases with her age. With increasing age, it not only becomes more difficult for a woman to get pregnant but to stay pregnant as outlined below:

In women ages 15 to 35, the incidence of miscarriage is between 10% and 12%.
In women ages 35 to 39, the incidence of miscarriage is 18%.
In women ages 40 to 44, the incidence of miscarriage is 33%.
In women ages 45-plus, the incidence of miscarriage is greater than 50%. -- source

Miscarriage is painful. I think it is more physically painful in the beginning and emotionally painful in the long-term. I also don't believe it is something that you get 'over'; you just get further from the pain with every dawning day.



When you have a threatened miscarriage (some still call it a threatened abortion), you can google and yet, as much as you can read and interpret, you can never prepare. Will it happen? When will it happen? Is there anything on earth I can do to stop it from happening? Is this considered spotting? Who named such a thing SPOTTING?! Did I do something to cause this? And then finally...



I remember posting on an Ivillage message board that I was miscarrying. The general response was that it was either 'the will of G-d' or 'a fortunate accident' because I was, after all, only 21. Having been told, at the age of 13, that I very likely had severe endometriosis, and a mother who refused to let them do a laparoscopy, I was glad to have been pregnant.



(I later had my laparoscopy in August 2003, was diagnosed with PCOS and uterine adhesions.)

Back then I had no idea what was going to happen. All I knew was that I had started bleeding lightly and the Internet told me I was having a miscarriage. And while this was an unplanned pregnancy, this was also an unplanned un-pregnancy.

Types of Miscarriage

Firstly, remember that a loss is a loss. A miscarriage is a horrible event that happens to good people and bad people, from the most deserving to least respectable. You cannot bring on a miscarriage by wishing you weren't pregnant just as you cannot desperately save a failing pregnancy with Hope alone.

However, it's often helpful to know terms that you may hear doctors or others bring up.


Chemical pregnancy -- "A chemical pregnancy occurs when an egg is fertilized but fails to develop successfully or implant fully in the uterus. A woman may miss her period and suspect she is pregnant; she may even have a positive pregnancy test because her body has produced some low—but detectable—levels of the pregnancy hormone hCG, but in a chemical pregnancy, there will be no gestational sac or placenta on ultrasound examination." -- source


Blighted ovum -- "A blighted ovum (or anembryonic pregnancy) refers to a fertilized egg that attaches to the wall of the uterus, begins to develop a placenta (which produces hCG), but then fails to develop into an embryo). What is left behind is an empty gestational sac (which can be visualized on an ultrasound)." -- source


Missed miscarriage -- "A missed miscarriage is when the embryo or fetus dies but continues to stay in the uterus. Often, the only signs of a missed miscarriage are the loss of all pregnancy symptoms, and less commonly, a brownish discharge. Confirmation of the miscarriage occurs when an ultrasound shows no fetal heartbeat." -- source


Incomplete miscarriage -- "An incomplete miscarriage is when some of the tissue from the placenta stays inside the uterus and some is passed through the vagina via bleeding. With an incomplete miscarriage, a woman continues to cramp and bleed (sometimes heavily), her cervix remains dilated, pregnancy tests still come back positive (or blood hCG levels are still detectable and don’t fall as expected), and parts of the pregnancy are still visible on an ultrasound." -- source


Threatened miscarriage -- "When there is some vaginal bleeding but the cervix remains closed and the fetal heartbeat (as seen on ultrasound) is still detectable, it is considered a threatened miscarriage. Roughly half of those women with a threatened miscarriage go on to have a perfectly healthy pregnancy." -- source


Ectopic Pregnancy -- "In a normal pregnancy, a fertilized egg travels through a fallopian tube to the uterus. The egg attaches in the uterus and starts to grow. But in an ectopic pregnancy, the fertilized egg attaches (or implants) someplace other than the uterus, most often in the fallopian tube. (This is why it is sometimes called a tubal pregnancy.) In rare cases, the egg implants in an ovary, the cervix, or the belly." -- source


Molar Pregnancy -- "A molar pregnancy is a rare complication. It happens when an egg and a sperm meet at fertilization, but the cells do not grow in a way that can support a pregnancy. In a normal pregnancy, the fertilized egg has 23 chromosomes from the mother and 23 from the father, making a total of 46. In a molar pregnancy the wrong number of chromosomes come together, and there are abnormalities in the cells that grow to form the placenta." -- source

Terminal Prenatal Diagnosis -- "Before a baby would pass away and the family may not know what’s going on. Now potentially someone could have an abnormal screening and diagnosis at 12 weeks and have this whole pregnancy stretch ahead,” says Cheri Shoonveld, a genetic counselor for Fairview Health Services in Minnesota and a spokesperson for the National Society of Genetic Counselors. “Families are having to make a lot more decisions and have a lot more time to think about the impact." As a lot of these pregnancies end before the 20th week, most are classified as miscarriages. -- source

Recurrent Pregnancy Loss -- "Habitual abortion, recurrent miscarriage or recurrent pregnancy loss (RPL) is the occurrence of three or more pregnancies that end in miscarriage of the fetus, usually before 20 weeks of gestation. RPL affects about 0.34%[1] of women who conceive." The first time I heard a doctor use the term 'habitual abortion, I felt it was such a horrid term. It still gets to me.

"Recurrent pregnancy loss is a profound personal tragedy to the couples seeking parenthood and a formidably clinical challenge to their physician. While spontaneous abortion in approximately 15% of clinically diagnosed pregnancies of reproductive aged women, recurrent pregnancy loss occurs in about 1-2% of this same population." -- Marcelle Cedars, Marcelle I. Cedars, Infertility: practical pathways in obstetrics & gynecology. p 467.


Vanishing Twin Syndome -- "Vanishing twin syndrome was first recognized in 1945. Vanishing twin syndrome is when one of a set of twin/multiple fetuses disappears in the uterus during pregnancy. This is the result of a miscarriage of one twin/multiple. The fetal tissue is absorbed by the other twin/multiple, placenta or the mother. This gives the appearance of a “vanishing twin”." -- source



In the years that followed, more accurate details of miscarriage appeared online for the general audience and slowly more recognition of the pain of miscarriage and of honouring lost babies appeared. Today, loss mothers can reach one another at their moment of need and feel support. In 2002, it was very different.

Being at university, I crept into the library and looked for textbooks that might give me an idea of what was going to happen, but miscarriage wasn't covered in the basic anatomy books and as no one studied medicine at my uni, those books weren't abundant.



The staining was very light in the beginning, a floral pink. And the cramping was slow to start but became intense. I was pretty used to pelvic pain, what with the adhesions, but this was different. I started to feel nauseated and sweaty. I broke a sweat and felt the pangs of contractions, not knowing what they were.

Over a period of a few hours, my cervix dilated and I began to bleed heavily, passing a maroon tissue, not dissimilar to raw chicken thighs, and saw swirls of light before my eyes. No one mentioned that in order to miscarry, one must give birth.

A Birth of a Different Kind

The cervix must dilate, not to the extremes of childbirth, but to allow the tissue and fetus to be expelled. The cervix then closes up and continues to bleed, much like a normal menstrual cycle, albeit heavier.

For most women, this is their first experience of birth and it can be frightening. Waves of contractions, nausea, sweats -- it seems like you're going crazy having to submit to this process that you don't even want, or may not even be aware of at the time.



If you have heavy bleeds to begin with, this can be extremely fatiguing as you do lose more than your normal amount of blood and it can seem like a whole lot at the time. The normal warning is that if you're going through more than 2 pads an hour, you need to go see the ER. Incomplete passage of tissue is very common and that can extend the amount of bleeding and pain as the cervix is still contracting to get it out and you're passing more fluid to try and free the tissue.

The Art of Miscarriage



Most miscarriages happen in the first few weeks of pregnancy, and a woman may not even know she's pregnant. I have pretty much always known because I become so unwell during those first few weeks. Sore boobs, headaches, nose bleeds, oh, and the puking. And the exhaustion. I think once you've experienced progesterone induced symptoms, you're more likely to recognize it the next time.

I generally get a sense of being 'less' pregnant right before a miscarriage. The nausea might drop off, the cramping ramps up and the exhaustion isn't so bad. I'm sure some women get varying degrees of pregnancy symptoms all through those first few weeks, but because I miscarry early, losing those symptoms seems to correspond with miscarriage for me. It seems to correspond with a distinct drop in progesterone and the drop in symptoms.

The only time the symptoms carried on was with my incomplete miscarriage before Sophie was born. I bled for weeks and passed little bits of tissue. I was just about to ask for a D&C to clear it all out when I realised it had stopped. I conceived Sophie just a couple weeks after that.

I feel it gave everything a good clean-out to prepare for her. The loss was also a Clomid cycle, so perhaps I had more lining in response.

Some literature claims that you bleed first and cramp second but I have experienced both, so I tend to think it's pretty impossible to tell a woman exactly how a miscarriage will progress for her. If every snowflake is different, so is every pregnancy and every pregnancy loss.

Squatting it Out: A Return to Ancient Times



Most women actually experience their miscarriages over the toilet or on the bathroom floor. There is something very natural about squatting during miscarriage and rocking on your knees can help the contractions. I've never experienced natural childbirth other than miscarriage, but I imagine it's pretty close to this.



As people tend to advocate for active birth, so should you seek an active miscarriage. Holing up in bed with tons of pain killers is one option, but personally I like the squatting and it's easier to clean up. I've seen women claim to want to experience miscarriage sans medicine but I have never done so. It hurts, I'm losing my baby and I'm bloody -- if I want some advil, I'm gonna take some advil.



Some doctors will write you a script for codeine based pills in anticipation of a miscarriage, but as you can't actually anticipate a miscarriage, it's best to take them when you feel the cramping begins. It's going to take a bit of time to get into your blood stream and contractions hurt. Depending on how well versed your cervix is in the art of dilating and contracting, it could be a long process or a relatively straight forward one.



When you consider something that is this small and tiny is coming out, you wonder why there is so much pain and so much STUFF.



Cute, ain't he?

Stuff



The truth is, there is a lot of stuff in there. Pre-placenta stuff, lining, embryo stuff, etc. And the cervix is a very delicate organ. It doesn't exactly enjoy your pap smears and being touched. So contractions really piss it off. No one likes an unhappy cervix, especially your cervix.

Some women tend to miscarry more in the late 2nd or 3rd month vs the very early miscarriages I have. I ovulate later, so I've been told my eggs aren't as 'good' as those who ovulate early or on time every cycle. I think it's rubbish, given that we ovulate when we're good and ready. Our bodies know a whole lot more than some stupid textbook or wheel.



However, given the number of miscarriages I've had, well...maybe they are actually onto something with that wheel.

A larger fetus will accompany more STUFF that needs to be expelled. This is where doctors and nurses begin to worry about Incomplete Miscarriages. As someone who has had both a natural and surgical Incomplete Miscarriage, let me forewarn you about the completely minuscule chance of going septic. Because I did.

"Septicaemia is a recognised risk following miscarriage, as foetal material can be left behind in the womb acting as a reservoir for infection. In addition pregnant women have reduced immunity to allow them to carry the baby without rejecting it." -- source

It causes trouble, loads of it. And it can be prevented by having an ultrasound after you think you're finished miscarrying. Any doctor who refuses to do so isn't a doctor you want to keep company with. If you, like me, were stuck with just 1 at your disposal, badger, badger, badger until you get that scan.

It could very well save your life.

Management of Miscarriages

A fetus at this stage, 10 weeks, would most likely be a surgical miscarriage due to all the additional fluids, pieces and risks that could come with an incomplete miscarriage. However, it doesn't mean that you would *have* to opt for a surgical miscarriage.



If you did have a natural miscarriage at this stage, I would suggest that you need to have weekly blood draws to follow your hcg and a scan to make sure everything had passed. Often some placentas just don't unhinge the way they should and can remain.

The officially stop calling a miscarriage a miscarriage at 20 weeks. It then becomes a pre-term birth, a pre-term stillbirth or a stillbirth, which is something that is welcomed. In recent years, it was only considered a pre-term birth after 24 weeks. This has allowed so many more women the option of a birth certificate and burial for their baby. However, most women will never receive a birth certificate for their pregnancy loss, as these rules vary depending on local legislature.

I, personally, wish it was offered at any gestation, regardless of whether an insurance company or hospital director feels your baby was 'a cluster of cells', a 'product of conception' or not.

If you would like to order a stillbirth certificate for your own purposes, try these keepsake certificates.



Most women who miscarry after 12 weeks will need some form of medical management. Either the loss is very sudden and can involve hemorrhage or the labour will have to be induced. I have read internet accounts of women managing to use herbs to induce a labour and birth of their stillborn 14/15 week old baby, but if it were your first miscarriage, I don't think it would be very wise to attempt.

Some OBs recommend only having a D&E vs the induction of labour and birth at this stage. A later loss generally results in the induction of labour vs the surgical route. You will often find advice labeled "stillbirth treatment" vs induction of labour for stillbirth.

It is your right to ask for time to consider what will happen, unless you are in the middle of hemorrhaging or have a fever and are at risk of being septic. For some women, the idea of their child not being born into this world whole is a very tough one. They want to see, feel and hold their baby. And that should be their right, but, if the situation, your insurance, or your OB cannot allow that, you must, absolutely must, find a way of connecting to your baby after the D&E.



If you are having a miscarriage at an earlier gestation, you may find the doctor wants to quickly zap you into the OR and 'get it done'. Again, you have the choice unless it is medically unwise to do so. Take a day or two to think about it. Recurrent D&Cs have been known to cause scar tissue, but they most likely will not render you infertile no matter the quantity. It is the quality of the D&C and how gentle or firm the surgeon is at the time.



This is why you want someone skilled and NOT a medical student. No offense to medical students, but I will not be letting a junior surgeon near my womb ever again.

After Care

The length of gestation generally predicts the length of post-miscarriage bleeding, unless it was medically managed, and then it relies on how much of a hard hand the surgeon had. Post-miscarriage bleeding is healthy for the womb. It can go dark and represent old blood coming out and you can spot intermittently for weeks. If you've had a scan to give you the all clear and you're still spotting, it's probably just the womb recouping.

If you haven't had a scan and you're spotting, ask for one. And if you find that you begin to bleed again when exercising, doing housework or with an increase in exertion, see your doctor. That is a tell-tale sign of retained tissue.



They advise you not to have a bath or go swimming until you have stopped bleeding. I've read accounts of women swimming in the ocean after miscarriage and found it fine. I think the concern is inserting tampons, and possibly introducing bacteria in an already super sensitive organ. It needs to rest and no matter HOW much you hate pads, just don't go the tampon route. Let the womb heal as it needs.

Most women I've talked to have noticed the pains stop pretty much once the tissue has passed, but there may be some tenderness remaining, especially if you had a D&C or a D&E. If you have ongoing tenderness or an area that is sore to touch, you need to see a doctor. Again, risk of retained tissue or even a cyst on an ovary may be causing it.

Asking for the Tissues

If you had a medically managed miscarriage, it is 100% fine to ask for the tissues. You must make the surgeon aware and he/she must make the lab aware. Often they will want to take samples to test for chromosomal abnormalities but they do not need all of the tissue to do so. They often take quite a bit as some of the tissue will be your uterine lining and will test only as you, so they test quite a few pieces to make sure they get the baby's tissue.

Sometimes, and it's horrible when it happens, the tissue is lost, destroyed or denied a return to you.

I had my last D&C of my twin loss during a lab strike and the tissue was mismanaged and we never had it returned to us. Knowing it was the last chance I had to bury my twin girls and then never having them in a tangible way really got to me. How could someone just chuck my flesh and blood in a bin?

Sadly, it happens.


Coming to Grief



Lots of rest and feeling the emotions as they come are the best ways of coping in the days after a miscarriage. No matter what anyone says, you've just given birth to your baby, lost your baby and had to get up and carry on in a world that doesn't allow anyone to be less than normal.

Grief is an inevitable, ongoing process. It's a 24 hour a day, 7 day a week process. It is consuming and exhausting. And while it would be nice for us to have the time to focus solely on our grief, time passes, life goes on and our grief becomes a passive process.

It's good to make the time to take an active part in your grief. Craft plays a large part in dragging the passive into the active. Knitting. Gluing. Sewing. Stitching. Painting. Clay. Gardening. Hands moving without conscious thought. The mind drifts while the body work. Some find this release in sports. As long as whatever it is is a healthy choice, not obsessive, it's all good.

Grief is very different for men and women going through the same experience. It can be hard for a man to understand what is going on in your heart, in your mind. And you may find you do not know quite how to address your husband or partner's grief. Women in a lesbian relationship may find it hard to address the grief of the other because the experience is so different between partners.

You may be actively grieving while your partner is in a passive place. Or you might be stuck in a passive cycle and can't deal with the active grief of your partner.



Surviving Emotionally can be a very trying experience, especially if you have a demanding job or children at home. We all expect to come to grief at some stage in our lives, yes it is not something that is taught. Learning about grief, your emotions and learning about strategies to help you cope is all really preferable to letting the grief overwhelm you, passively, for months on end.

For some women, miscarriage can be a traumatic event which replays endlessly for them. If the loss was sudden or involved hemorrhage, post traumatic stress disorder or similar symptoms can develop as the woman struggles with the loss of control and the resulting loss of pregnancy. The emotional distress and anxiety can become encompassing. Depression following a traumatic miscarriage or a medically managed miscarriage is very common. Ongoing depression is often found in women who are undergoing infertility treatment who miscarry.



Take time. Today is not the day to decide if you're going to move onto IVF. Or whether you can afford IVF. Today isn't the day to start screening REs or question how many miscarriages they think you *need* to go through to get the recurrent miscarrier label.

Today is the day to mourn the loss of your dreams. Cry. Scream. Sing songs. Listen to the radio or cds. If you purchased things for your baby, you may feel the need to touch them or conversely, you may feel the need to pack them away. Please don't throw them all away today. Just fold it all up and put it somewhere else.

Feel what you are feeling. Denying these feelings is a recipe for disaster. If you are having a traumatic miscarriage, look into Post-traumatic Stress Syndrome. A lot of women who hemorrhage go on to develop a depression about what happened and how scary it was and how out of control they were. A ruptured ectopic can result in a similar experience in the loss of control, loss of blood and sudden loss of pregnancy.

Talk. To a counselor, a compassionate friend, pastor or relative. Don't entertain the company of people who tell you how you SHOULD be feeling or that what you're feeling is anything but normal, natural or useful. You are in mourning and you deserve the right to mourn safely however it suits you. Look into Elisabeth K├╝bler-Ross and seek to feel grief.

If you are a friend, partner, family member or relative of a woman going through pregnancy loss, please bookmark and save this resource from Baby Loss Comfort. There are things we desperately NEED you to say to us to open the conversation about our loss. Carly Marie Project Heal has a lovely page on what you CAN do to help those you love.

There are a lot of blogs, message boards and sites on the internet for loss mothers. Some are religious. Some are spiritual. Some are supportive and a few are troll-dens of childless women who want nothing more than delight in your pain. Avoid those ones. But open your willingness to become 'friends' with these women and share stories. And pictures.

I want to point you in the direction of Glow in the Woods. This is a fantastic first destination in opening the wound and inspecting and respecting your loss. The grief resources are also very good on this site.

Other loss mothers know how beautiful your precious baby is and how precious those photos are. If you are like most miscarriage mothers, you don't have a photo of your baby. I like to look at fetal photos of the same gestation and think about how he or she would have looked. Other loss mums get that.



Now is not the time to fall for 'get pregnant and never have another miscarriage' books, websites, vitamins, diets and whatever else people are boasting about on the internet. Certainly don't whip your credit card out to pay for these things. You may never have another miscarriage. You may have another. Right now is not the time to try and stitch together a plan that involves people preying on your pain.

If you need to actively purchase things, consider books on grief or baby loss, NOT trying to conceive or prevent miscarriage books. That time will come later. But for now, you need to delve into the grief and truly grieve. The beauty of books on loss and grief is that once you are done with them, you can donate them so that other mothers and fathers can read them too. Here is a good listing of titles to consider.

Remembering



Jizo is special to pregnant women and to those whose children have died. Statues of Jizo can sometimes be seen wearing tiny children's clothing or bibs. Grieving parents place toys and other offerings beside the Jizo statue to invoke his protection of their dead child. Offerings are also made by parents to thank Jizo for saving their children from a serious illness. -- source


When they tell you that it does get better, believe them but don't force the feelings to go away. It never truly stops hurting, but it stops hurting as much as it does today. There were days when I felt I'd never be able to take a deep breath because there were pins stuck in my lungs. Now, I feel guilty if I don't feel more sad on a daily basis.

Part of healing is remembrance. And part of remembering is grieving. Most of us don't have time to spend all day grieving, so our grief is a partial or obscured grief. When people look at you, they don't know the pain you're feeling. And you can't expect them too. You *can* expect to hear a lot of things that should never be uttered, but lots of people are working on education surrounding baby loss.

If you were able to obtain your baby's tissues, you can have a burial or cremation. Special boxes or bears have been designed to hold your baby's ashes.

If you haven't been able to request your baby's tissues, or like a lot of us, you never thought to save your baby's tissue (or it got flushed away in the toilet), remembrance jewelry is a good idea. This is also great for family and friends who want to support a grieving mother but can't think of an 'ok' gift for her.

La Belle Dame is a jewelry store that supplies memorial jewelry and has been supporting grieving families for a long time. They offer a key chain that can be given to the father or grandfathers.

If you are in Australia, you can order a Bear of Hope for families who are going through miscarriage and baby loss. Bears of Hope also do certificates of life for families in Australia as well.

Carly, at Christian's Beach takes photos of your baby's name at sunset, which can make for a beautiful reminder for the parents or grandparents.



I have not asked Carly for permission to put up one of her images yet, but I'm getting there. I hope she will say yes, because I want people experiencing loss to see her work. It is so shockingly, heart breakingly beautiful that you know it is from the heart of a loss mother.

For some of us, all we have is a name that never gets said yet lives on the tips of our tongue in anticipation of a moment we can speak it.

For me, it's Autumn and Isla. Born together, died together. Far too soon.

They were mine, and yet they weren't. You'd think I was crazy, but I live for a moment I can name them aloud. Pay tribute to their being. Pay tribute to their death. Pay tribute to the sadness, pain and grief in my heart.

I never even saw them, not even pieces of them. Swept away into a rubbish bin. Rotted. Decomposed, as if nothing could have ever come from them.

They would have been 4 this year. Big girls, at kindy. My darling twin babies.

A mother in mourning, I shall forever be.

If you, like me, are a Twin Loss mum (having lost one or both of your twins, at any stage, gestation or year, feel free to join us on Facebook at: Twin Loss NZ.

Yes, it's aimed at those of us living in NZ, but we welcome any mother who has had a twin loss. Twin Loss NZ has wonderful resources for any mother, especially aimed at those who have lost twins.

Life after Loss is difficult and the transition from Life Before Loss to Life After Loss is often fast, fragmented and fearful. But it is still Life. It is still worth living. Breath by Breath you can make it.



It isn't easy, but I promise it's worth it. <3