Sunday, December 18, 2011

Cat Christmas Cards

Things have been pretty intense here lately getting ready for Christmas. The hip has been slowly progressing but some days it's popping in and out of alignment and nothing short of icing it constantly helps.

One of my favourite, stress reducing past-times is making graphics featuring my cats. I like the editing and cropping, the creativity of it all.

So, here are 4 Cat Christmas Cards, only 3 of which actually feature cats. The Kiwi one was just too nice not to share. I didn't take the photo, but it sums up the relaxed nature of Kiwis at Christmas.

Twas the night before a Kiwi Christmas:

On Christmas Eve, Santa's Elves make sure the reindeer are well fed for tonight's magical journey:

Tropical Kitty Christmas:


Merry Christmas to you all, and a flare free day (hopefully)!

Edited: I posted this with the big images first, and then shrunk them using Photobucket, so the text isn't fab. Click for the larger image.

Thursday, November 17, 2011

Catch Up

Just a quick post to say I'm still here, not posting a lot, but still thinking. The hip inflammation has settled down dramatically, but now I'm actually capable of finding out what causes the pain.

When you sit down and relax, the hip moves -- that causes pain. Then, when you go to stand up, the hip re-engages -- that causes pain. PAIN.

Pain all day. So, if I sit it hurts. If I stand, it hurts. I have to lie on my left side with a pillow under my right butt cheek and roll onto my back to get comfy.

Not a lot of fun.

My GP is back and I see him Monday.

Matt will be in Canada for more than 2 weeks, so, I'm not looking forward to it all. It's going to be hellishly hard.

I'm writing 2 posts at the moment, one on my most commonly asked search result: What causes miscarriage and one about PCOS and it's ties to autoimmune diseases.

The local community garden was denied it's application and I'm trying to lobby for the reserve next to us. The guys were just here to tidy it up, so hopefully others will like the looks of it.

The little grey cat taught us all a lesson in gluttony. Apparently he's been hunting the local lizards (skinks) and eating quite a few. He was very sick for a wee while, which the vet related to eating a box or two of chocolates. We caught him trying to bring one into the house the other day. Hopefully we gave him enough of a scare that he won't try to bring them home. That at least gives them a fighting chance to get away.

My eyes have been horribly sore and I don't know if it's the bright NZ sun or some sort of eye inflammation. They don't look red or dry, just very sore.

Hopefully I'll know more about my hip on Monday and have some time to finish those big posts.

Thursday, November 10, 2011

What does TRAPs looks like?

It's a google search I get a lot. What does TRAPs look like? Good question.

This is what it looks like:

The TNFRSF1A gene is located on the short (p) arm of chromosome 12 at position 13.2.
More precisely, the TNFRSF1A gene is located from base pair 6,437,922 to base pair 6,451,282 on chromosome 12.

Yup, that little blip is where all the mutations can occur to cause all this trouble.

More than 60 mutations in the TNFRSF1A gene have been found to cause tumor necrosis factor receptor-associated periodic syndrome (commonly known as TRAPS).

I was tested either for 2 or 3, and because they did not come back positive for a mutation, I am deemed not 'diagnosed' for TRAPs, therefore, I am not able to be funded for enbrel.

With some patients with some various autoimmune or autoinflammatory diseases, there is a nice salmon rash that appears in various parts. Lupus has the 'butterfly' mark, some with Still's Disease get a patchy salmon rash just before their elbow on the inside of the arm.

FMF'ers and TRAPpers really don't have a distinguishing feature except maybe a stereotypical racial identity.

For those with FMF, you're looking at a melting pot of Greek, Turkish, Iranian, Italian people who's forefathers have intermingled. It sometimes appears in Jews of the area but not the entire Jewish population.

For Traps, you're looking at the Scottish and Irish folk who have not interbred with the English. When you have mixed with the general English people, you are more likely to have another autoimmune or autoinflammatory disease, but because of the variations of mutations, you might be affected.

My link back to Ireland is my maternal grandfather who was Irish, however my mother had quite olive skin.

Given that my last name is now Scottish, I sort of fit the TRAPs picture.

The single most identifying feature between FMF and TRAPs and against the 'normal' picture of a person is the fever.

This is in F, of course. For those of us who use Celsius, it's as follows.

Normal Body Temp: 37C
Oral Fever Temp: Over 37.7/37.8C
Rectal Fever Temp: Over 38.05C

I've taken various photos of the 'mask' like redness I get when I have a fever, but all I was told was: "It looks like you have a fever."

There ya go.

What is the difference between an Autoimmune Disease and an Autoinflammatory Disease?

Autoinflammatory diseases (AID) and autoimmune disorders both result from the immune system attacking the body’s own tissues. Both of these disorders also cause inflammation. However, in autoinflammatory diseases the innate or primitive immune system causes inflammation for unknown reasons, whereas in autoimmune diseases the immune system mistakenly reacts with the body’s own cellular components as if they were foreign antigens. Autoinflammatory diseases also have a hereditary component usually associated with a gene mutation.

The article does state: "Attacks of TRAPS can be prevented with colchicines, whereas glucocorticoid steroids are used to reduce symptoms." Which is sooo not the way I want to see doctors treat patients with TRAPS. Seriously, Colchicine makes you poop all day long, you become dehydrated and sore. It doesn't do much at all to stop or shorten flares.

So, while I can't show you what TRAPs looks like, as I don't get an itchy rash on my legs, and I am more affected by fever, inflammation and arthritis, which are all invisible, I can show you what maintaining TRAPs looks like.

This is my morning ritual:

That is Prednisone, Citalopram, Prilosec, Magnesium, Spirulina, and my pain killers, Ibpuprofen, Codalgin and Diclofenac. I take the Seroquel at night. During times of pleurisy, I take the Vick's Formula 44.


I often get tummy upsets, either in the form of reflux or just a general upset stomach. I take both Aloe (this is Lifestream Aloe) and Slippery Elm Powder. Slippery Elm Powder is amazing and you should all add it into your diets.

When feeling overwhelmed or tired, I take the Elevit Multi for Women with Children, and when I start to get a bit achy in the kidney, I take Red Seal Cranberry capsules. I often get cystitis and the cranberry works really well to help prevent it.

For stressful times, I take L-Theanine and for coughs that won't settle, I take Wild Oregano Oil. Both are from Solgar and were finds from my friend Anna. (Hi Anna!)

Because I've been on the steroid a long time, I have to take calcium. I often forget as I'm supposed to take it away from cups of tea and as I drink tea all day, I don't remember to take it.

You can see they even upped my dose from 500mg to 600mg twice a day.

And my favourites, my health promoters.

I love to take an apple or two, cover it in squeezed orange juice and have the two together.

Tomatoes, when in season, are also divine. I like the truss kind and find the smell of the tomato vine heavenly.

Monday, November 7, 2011

Tried And True Eco Tips from an Aspie Mum

As most of you know, I'm Mama to a kid with Asperger's, sensory issues, anxiety and sleep disorders. It's a full basket and comes with things like constipation, reflux and panic attacks. They're pretty sensitive on the inside.

But, most sensitive kids are also sensitive on the outside. It develops into things like Eczema, warts and sores that don't heal.

Soph had quite bad Eczema and she had both the dry and the weepy kind.

Like most Americans, I grew up with Johnson & Johnson's No Tears (there ARE tears!!) and so, I bought that for my baby when I was expecting. It's quite expensive here in NZ, so it's really a consumer move to purchase J&J stuff.

However, by about 6 weeks, my baby was starting to feel like rhino. Rough, prickly skin. I would feel other babies and people would feel my baby and ask what was going on.

A lot of people told me reflux babies tend to have dry skin, but no one mentioned sensitive skin.

This isn't Soph, but this is quite similar to her eczema patterns.

When she developed both the oozy and dry kind of Eczema at about 14 weeks, we started on the Pinetarsol bath (the green liquid you add to the bath), and the horrible cream that feels like old fashioned cooking lard. Ugh. That just made her sticky, smelly and itchy, especially in the NZ heat.

As we are closer to the Ozone hole, there isn't as much block from the sun's rays, so people tend to burn quicker and deeper than you might in the US.

So, in addition to all the bath stuff, we were loading her up on Super Baby 70+ sunblock which is loaded with chemicals. The poor poppet was like a lobster with all the irritation and redness.

Finally, a homeopath told me to get rid of the chemicals. I hadn't even considered the chemicals in all the crap we were putting on her and around her.

First, we ditched the washing/laundry detergent. At the time, we were using Persil and we went to a liquid amolin laundry wash. At times you can find it quite affordable at your supermarket and I know quite a few front loading machines recommend it, which is a great step for your family. However, it looks as though Bayer has decided to stop producing it. I hope they are replacing it with a similar product because there is a real need for parents to move to less chemicals with their new babies.

So, Amolin, we tried it for months. Did nothing. So, we went even further and began using Soap Nuts.

The brand I purchased during my 12 months with soap nuts was Global Soaps. I found it at my local organic shop and was very pleased with the brand.

Soap nuts can take a few washes to get the soap residue out of your machine and off the clothes. The clothes feel different when washed with soap nuts because there is no agent to soften the fabric.

Using Soap Nut is incredibly easy. The 'nuts' are really the reproductive berries for the plant and are little round black nuts. They come in a soft, sticky, sour cherry smelling 'shell' and this is where the cleansing agent comes in. You break a few of these nuts from the bunch and put them in your little draw string linen bag. Toss it into the area when it will receive the most agitation and toss your clothes in.

I used cold water and therefore needed more nuts because less of the surfectant is released. However, if you use warm water washes, you need fewer nuts but they do not last as long because the surfectant is released more thoroughly.

You know it's time to chuck them when they are no longer stiff or sticky. You then toss them into your flower garden or veggie patch and they rot and compost.

If you're lucky, occasionally you will get the little black nut and can keep them to start your own plantation. They require quite a lot of destruction to the nut to get it to sprout and it takes about 7 years of maturation before it will fruit.

I loved my time with soap nuts. I adored the smell, how absolutely CLEAN my clothes were, but there is an issue in that your whites are no longer Clorox white and stains don't come out.

But, there are adjuncts created to help.

This is the stain remover bar. I never found it effective on things like mud, blood, paint or felts, but it smells divine.

For a fresher smelling laundry, you can add the Essential Oil blend.

I used this for everything. I put some in the cistern of the toilet, in my dishwasher, in my laundry, in my dryer balls. It is heavenly. I found it so calming but without that sort of sleepy effect.

Finally, there is the whitening powder.

This was my lifeline trying to keep my clothes stain free. It was fantastic. And Soph's skin didn't react to it.

So, that took care of our laundry, which I think was contributing a LOT to her eczema. I would do sheets, towels, pillows, clothes, blankets, etc. There is no point in reducing chemicals if you're just going to wrap your child in chemical residue.

One of the WORST offenders in chemical induced eczema is fabric softener either in a liquid form or in dryer sheets. Being an American, I was horribly addicted to dryer sheets. It took me about 5 years to find a dedicated retailer, and I bought in bulk. Time and time again, fabric softener is indicated as being a skin offender.

However, there is hope for you commercial cleaning addicts!

Currently, tried and tested in my own home, is MY advice. Take it or leave it, but this is my tried and true laundry plan.

For stains, I soak in warm water with baking soda or I spot clean the area with a bit of palmolive soap, warm water and finger scrubbing. Soaking is great for socks and cloth pads. I do not use a commercial stain remover.

We began using laundry powder again after 12 full months on soapnuts. That meant that the soap nuts traveled with us and when we were sharing a washing machine, yes, the soap residue from other's clothes did affect ours. If I was washing soph's clothes, I'd do a rinse before adding the soap nuts, then do a wash with the soap nuts. The commercial soaps do strip the nuts, so prepare to use more.

Currently, I use 2 brands. I prefer Next Generation Lavender Laundry Powder more, but supply is often an issue and I've found Earthwise Orange & Eucalyptus Plant & Mineral Based Super Concentrate Laundry Powder is more readily available. However, you can buy Next Generation products direct from their website.

Now, you will notice that a lot of 'eco' brands write that they use a concentrated system and this is something to note. If you are doing a load of laundry for someone with sensitive skin, please adhere to the limits they have provided for you and use as little as you need with plenty of water.

For a while, I foolishly was adding an 'extra' bit for more cleaning power and using an eco wash with limited water and finding the clothes were coming out caked in powder. I'd just dust it off and dry them. Bad move! That soap will cause contact dermatitis for EVERYONE, not just your eczema kid.

I bravely made the move to try Earthwise's Papaya & Aloe Vera Fabric Softener. Like I said before, I'm an addict! Thus far, we've had no major reactions, but I have been very limited in my use, mainly just for towels as we really love soft towels here.

If you want a non-chemical solution to fabric softeners, Dryer Balls would be the way to go. I made my own using a real wool knitting wool. I basically tied a knot and wound the ball until it was a huge ball, washed it a few times and presto, had my own dryer balls.

Now, mine was a non-instruction based attempt, as I wanted non-plastic dryer balls but did not know where to find them. In the end, I had a washer full of loose wool that smelt like sheep. Not bright. So, I unwound my machine, rewound the balls and stitched the ball together. That worked for a while until the balls started to fall apart.

I will say, they did absorb a lot of water in the dryer and my towels felt nice. I was, however, put off by the mess, so threw them away. It was a sad day.

Enter the Solution: Tumblemonkey Handmade

Unless you are well experienced in the art of felting, you need professional help. For all my Kiwi and Australian readers, Tumblemonkey Handmade is the way to go. And, if you are using cloth diapers, want to use cloth diapers, or have a friend using cloth diapers, these dryer balls ARE the best gift. I'm asking for a set of 3 for my stocking this year.

(She also has the most creative and gorgeous felt creations on Etsy.)

A lot of eco families do not use dryers and I really respect that. We were without a dryer for 6 months, thankfully over the Summer. My clothes line is up a hill and it is terribly hard to go up and down while the bricks are wet or I am sore. And living in Wellington, that's almost daily.

So, cutting dryer time is a major ECO move for families. I believe dryer balls that absorb the water or humidity in the air is the best move. I can't put into words how excited I am to get them in my stocking.

Cleaning the Home

Then came the other cleaning chemicals in the house. I was one of those people who tried to use an 'all-in-one' product so I wasn't having to use 3 different products for cleaning. I'd buy the Baking Soda or Essential Orange but, chemicals are still chemicals.

For that, we moved to baking soda, and old tooth brush and vinegar. Yes, it takes elbow grease and that is often hard with arthritis or fibro. Like you, I don't want to punish myself in trying to do better for our family.

So, if you need something to degrease a product, palmolive is just as effective and you can make you own spray by adding palmolive and water. Shake to activate, spritz, leave for 5 minutes then scrub. I hate the feel of microfibre cloths, but Matt finds them very useful.

For floor care, vinegar can work well to brighten, refresh and clean linoleum. We have a mock wood floor and I sometimes sprinkle baking soda on and brush it around before mopping with vinegar and water.

Some people use Apple Cider Vinegar but it can be quite expensive here, so I just use plain white vinegar bought in bulk.

Cleaning with vinegar is a great way to avoid exposure to many hazardous commercial household cleaners and it's cheaper, safer and easier on the environment.

The cheaper distilled white vinegar, available at your local supermarket, is the best type to use for cleaning. The acetic acid in vinegar is an effective disinfectant, deodorizer, and cleaner which will cut grease and soap scum, dissolve mineral buildup, and inhibit mold and bacteria growth.

For the household, a number of time-honored vinegar cleaning recipes are included some of which require, for best results, the addition of other readily available non-toxic ingredients such as:
Salt - to help dissolve tarnish.
Baking soda - to absorb odors and act as a mild abrasive.
Hydrogen Peroxide - to help disinfect.

Caution: Do not add vinegar directly to materials containing ammonia since this could produce harmful vapors.

Now, onto the Toilet and Bathroom.

When I gave up my toilet blocks, I cried a few tears. To be honest, my toilet gets mucky very quickly. There is no magic blue wash that cleans for me. I have a husband who doesn't flush to save water. I have a child who freaks out about said pee being in the toilet, so there is always toilet drama in my house.

I found to get the stains out with baking soda and vinegar, it was hard work. I was lamenting to my homeopath at the time about having to scrub the toilet with vigor and being sore from it and very exasperatedly she choked out: "Use shampoo!!"

I was stunned. Shampoo? In the Loo?

But it works well. There is a of surfectant in shampoos and the very cheap kind can be liberally squirted, and it works well. I just squirt it in, brush it down and flush. Of course it doesn't have chemicals to inhibit growth of icky things, but it's a quick, effective wash.

I wash my tub with my daughter's eco shampoo and I use my husband's shampoo to clean the shower. Then they both have the same product touching them that they are already used to. We have a frosted glass shower door and to be honest, I don't try to get the soap scum off it, I just leave it as it is after a clean.

The sink gets a scrub with eco shampoo and it comes away brilliantly.

We have quite a damp home and mould on the windows over winter is an ongoing issue. Vinegar sprayed onto the aluminium joinery helps to delay the mould, but nothing short of hard scrubbing removes it.

Carpet Care for us is the downfall. Between muddy cat prints and dropped food, our carpets are a mess. I really would like to find a good chemically light treatment for my carpet.

My last tip is for pet odour. As I mentioned in the past, we've had a cat pee war involving a couch that can't really be taken apart. We tried sprays from the store, but the smells that came with those things made me sick.

One was called a 'clean' scent with vanilla and lavender. I felt so sick from the smell we had to leave the doors and windows open.

ElimO Veterinarian spray is a recent find. It's made in Knoxville, TN, but you can get it here in NZ by ringing 0800 700 100.

Now, it IS harmful if consumed, so keep it locked away.

You add 4 fl oz to 28 fl oz and can spritz it on curtains, fabrics, in the litter tray, in the air. It has a lightly floral scent.

You CAN use it full strength, but I'd really only put it straight onto pee.

So there you go, tried and true eco tips from an Aspie Mum. Keeping things safe for their sensitive insides and outsides is key. The insides take a lot of work, but it really is simple to reduce chemicals in your home.

Wednesday, November 2, 2011

Jen Answers Your Questions I

So, I've been getting a lot of hits from random google searches, so I thought it would be fun to list the questions and write answers to them. Fun for me, hopefully informative for you.

1) is it possible for the gestational sac to continue growing after missed miscarriage?

Not technically. Technically for a pregnancy to be classified as a 'missed miscarriage', the pregnancy will have already ended, but without the process of miscarriage beginning.

A Missed Miscarriage by definition is a fetal demise/death that has occurred without the process of miscarriage starting. For the gestational sac to continue to grow, there would need to be a continuing pregnancy of some sort.

I would think this question is for an early pregnancy that hasn't quite gone past the embryonic stage to a fetus in which one can really only identify a sac, a fetal pole and/or a heartbeat. And, if you don't see a heartbeat, it doesn't always mean fetal demise.

"The gestational sac can be visualized as early as four and a half weeks of gestation and the yolk sac at about five weeks. The embryo can be observed and measured by about five and a half weeks. Ultrasound can also very importantly confirm the site of the pregnancy is within the cavity of the uterus.

Blighted ovum will usually give typical pictures of a deformed gestational sac and absence of fetal poles or heart beat." source

If you, however, don't see a heartbeat after several attempts, I'd say the pregnancy has ended.

If the sac is still growing, and there is no heartbeat, I'd be far more curious about what is going on.

"A blighted ovum is a type of miscarriage in which the baby either never develops or stops growing at a very early stage in pregnancy and then disintegrates -- but a gestational sac does develop and the body does not recognize that the baby is missing.

Doctors believe that blighted ovums are the result of chromosomal abnormalities in the fertilized egg." source

Blood tests that measure the hcg hormone in units is your best bet. Because, a pregnancy will not continue if the hcg is not rising. End of story. The pregnancy naturally begins a hcg decline once the placenta is fully established and the baby is almost in the later stages of the 2nd trimester.

"In a blighted ovum, it is true that the baby did not develop enough to be visible on ultrasound, but a conception did occur and the pregnancy did exist -- and it is OK to grieve the loss of the baby." source

Examples of Blighted Ovum

2)is it possible for hcg level to increase with missed miscarriage?

Not technically. Technically for a pregnancy to be classified as a 'missed miscarriage', the pregnancy will have already ended, but without the process of miscarriage beginning.

Until fetal demise, there is always a chance of the hcg to increase, albeit not at a normal level. Some inevitable miscarriages will feature hcg growth of 1 to 10 units between draws signally the pregnancy is continuing but not at a healthy or ongoing rate. Once the hcg begins to fall, the body has recognised a fetal death or demise.

Often, a slow growth rate of below normal will occur, prolonging the pregnancy although it will not eventuate into a successful birth. Generally, the pregnancy will begin to arrest before the 2nd trimester, making this a traumatic and slow, devastating time for the couple.

3) miscarriage ultrasound pictures

Click on to my Miscarriage page to see some great ultrasound pics.

4)sac like tissue miscarriage

I imagine this question is for the woman who is passing tissue. I have no idea what the sac looks like as all I have ever passed looked like a quarter sized, light purple, shiny bit of raw chicken thighs, which I imagine was the 'product of conception'. Everything else I assume is endometrial lining.

You have to remember that these things are so incredibly tiny they may be passed with the blood loss. I believe we're looking for something the size of a rice grain, possibly to the size of a raisin, and it's likely to pass without ever being seen.

You are far more likely to see clotting and endometrial tissue.

4) blighted ovum ultrasound

Examples of Blighted Ovum

5)is heavy travel during 1 week of pregnancy cause chromosomal abnormality?

No. Travelling cannot change the genetic outcome of your pregnancy. It can change the physical hormone profile of the pregnant mother, but once sperm and egg meet, nothing can any abnormality that exists.

The only time a mother can influence her pregnancy's outcome is by what she puts into her body during preconception and post conception. Things like FOLIC ACID can help to prevent neural tube defects, but once an embryo has formed, you cannot change that embryo's genetic make up for the better or the worse.

This is why PRENATAL care is the BEST thing you can EVER do for your children.

6) right side tubal pregnancy ultrasound

The fallopian tube is the most common site (95%) for ectopic pregnancy.

The OV stands for ovary and the pregnancy is located in the tube.

7)inside a womans body diagram

8) empty sac ultrasound

This is an empty gestational sac (which can be visualized on an ultrasound.

9) diagram of pregnant woman

10) stages of an egg traveling to the uterus

This is truly one of the best you will find as it features both the stages of egg maturation and the process of conception to implantation.

11) causes of hidden fallopian tubes

Often, when a woman goes for an ultrasound, especially if it's an abdominal ultrasound and not a transvaginal one, various parts of your anatomy may not appear. It's not that you don't *have* these bits, it's just that the machine cannot visualise them.

We tend to forget that our bodies are living. They move. They sway. They are not as flat and static as textbooks represent. The best way to visualise this is to think of an aquarium.

The movement of the water makes plants sway back and forth and from side to side. The movement of fish in the water also affects the sway of the fish. It's the same if you're snorkling or scuba diving and see kelp growing upwards. Lots affect the movement, but it is never, ever static.

The same is true of your internal organs. They are always moving. Gurgling of the bowels, spasms of the uterus, etc cause your organs to move 'out' of the picture they're trying to take via the scan.

Another cause is your bladder. It's infamous for hiding ovaries.

I once had an abdominal scan for cysts and the tech was sure I didn't have a left ovary, which would suck because my right ovary is the 'bad' one. I told her that I had a laparoscopy in 2003 which did indeed show I have a left ovary. But she was convinced. Finally, I got up, shook myself all over and laid back down. Voila! There is was.

So, if you had a hidden tube, more than likely it's there. You might just need a better machine or go transvag.

12) hidden embryo appears in ultrasound

Big hugs to anyone who has gone through the process of trying to find an early pregnancy on ultrasound, especially if it's not blatantly there.

I've experienced two situations. 1) Look, there's your baby or 2) I'm sorry, there's no baby.

I've never been in the situation of trying to find something that may or may not be there, but many people have, lots of my friends included.

My best advice would be to have several hcg draws and schedule another scan for 7 days later. As the embryo develops into a fetus, you will be more likely to see it, especially if you're relying on an abdominal ultrasound or a poor quality machine.

If it's still not visible 7 days later, I'd go for a transvag ultrasound and look to your hcg numbers.

Lots of twins (or even the occasional tripley) 'appear' a couple weeks after the initial pregnancy ultrasound. That's not because they didn't exist then, the machine just didn't catch them.

13) diagrams of miscarriages

I'm not sure what you were looking for, but I hope this helps.

The Pee War of '11

So, I've been engaged in the great Pee War of 2011.

A Pee War, for those who've never had the pleasure, is usually a cat affair but can occur with any alpha-esque relationship with animals.

Basically, for me, one cat has an accident. The other, not wanting to allow the other's scent to be in the house, go and marks over it.

Then, the first detests the scent of his rival and marks over that.

On and On it goes. And cat pee is hard to get out of anything, most of all fabric that can't be soaked or washed or hung in the sun. Like a couch.

My Andy

We had Halloween on Monday, and in NZ, it's a sort of affair that is growing in popularity due to more shops and expats finally having the guts to be proud of the holiday. But, it's still considered in 'bad' taste to participate and most call it 'organised begging'. It makes me sad.

We dressed to the nines, as usual.

Soph was Dorothy, Matt was the Tin Man and I was the Wicked Witch of the West. Green and all. I'm still slightly green tinged, even after vigorous scrubbing.

It was a fab night. I was very tired Tuesday though, especially as I hadn't taken my crutch.

I did my first shop at the supermarket with my crutch yesterday. It went ok.

Soph is tall enough and strong enough to guide a little cart but still gets distracted and crashes.

The issue came when trying to unload the cart at the checkout and having my helper disappear to get herself a chocolate bar.

But! Light at the end of the tunnel! The cashier was an absolute angel and she unloaded my trolley onto the checkout belt. Wow!!

I was so grateful and felt like buying her a bottle of wine. Even with a newborn and a c-section, no one has put my groceries on the belt for me. So, an upside to the more visible sign of illness.

The real excitement came last night, however, when we finally caught the Jack Russell terrier (terror) who's been chasing the cats for a year. He/She usually comes with his/her poodle companion, but the poodle is far too smart and runs away.

They come onto the property and chase the cats around the back to the cat door and then, worst of all, they COME inside.

The Poodle has fully come in, the terror has only put his/her head in as he/she is far too fat to fit (thankfully!!).

The terrier is my real worry as they love to hunt and a cat is just like a stoat or a rat to them and Ben, my tabby, has already had his neck bitten, requiring vet stitches, antibiotics and boosters against communicable disease. It's expensive.

By law, in NZ, your dog must be registered, fenced and microchipped. This owner has been repeatedly reported (by me) and paid fines 4 times this year but refuses to build a fence.

The Law States: a dog owner must ensure at all times that, when their dog is on their property, it is either (a) under the direct control of a person, or (b) confined in such a manner that it cannot freely leave the property. If this requirement is not met the dog may be seized. source

Soph is 6 and the little girl next door is 2.5 who is dog and cat mad. She basically runs at them and pats them. That is what 2.5 year olds do. The problem is the terrier is also a biter. So this is a HUGE risk. Not just to my cats, but to the kids too.

I believe the owner came by last night looking for the dog. He was holding the poodle and asked a lot of questions but denied it was his dog.

I did get into his face a bit about the poodle, as it was the poodle who bit Ben, but he claimed his poodle 'would never do that' before he ran off. Yeah buddy, it was in my HOUSE!!!

It took about 2 hours of persistence, but we did manage to capture the terrier thanks to Matt's bravery and thick blanket. I had tried twice to restrain her myself, and she nipped me twice (totally not her fault, she was stressed).

When animal control showed up, the girl was brilliant. They have an 11 month old file on us and she knew all the details. In the back of her van she had a black Scotty dog named OPRAH who had got out and run amok. It was gorgeous!! Hopefully her owners will make sure she doesn't get out again. That's the type of dog people steal for the reward.

It did involve quite a bit of running, leaping, etc and I'm not as sore as I imagined I would be, but I didn't sleep at all, worried about what's going to happen to the dog. Did we stress it too much? Will the owner punish it? He doesn't seem to be a great sort of guy.

Gah. I was up all night feeling horrible for detaining it. If they can't pay to claim her, they'll put her to sleep.

But, at the same time, I can't have a nipping dog coming onto the property and biting my cats or child. My older cat is far too old and arthritic for the dog and I'm worried what will happen if the dog gets Andy.

Benny is still a young thing and very fit. But he won't always be.

Aaaaaaah. The guilt is horrible.

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.


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.


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 -

Or more stylish ones:

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. 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.


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.


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

* Memories Candle Holder Price: $25.00

* Memory Of Life Candle & Holder Price: $29.00

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

* Lig 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 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 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