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.

The Roulette Wheel of Diagnosis

Dear body, I'd reeeeally like to go to the library today. Could you please stop hurting? Please? (The short answer was no.)


Part of living with something no one understands is that you don't understand it either. You probably 'get' it more than others, but because there is no standard rule, no benchmark to gauge your own normalcy, you always find yourself questioning it. If I hear about Vasculitis, I immediately go re-google it to make sure I don't secretly have it and my rheum missed it.

(PS. If you or someone you love has vasculitis, the John Hopkins vasculitis resource online is AMAZING.)

It's like diagnosis is a roulette wheel. Every time you hear of something, maybe, truly this is it! You race online to see what the symptoms are. Oh hey, that sorta kinda sounds like me. Maaaaybe this is it!!

Nope. No. It isn't. Ok. Next!

House, MD was truly epic for me because people would watch an episode and send me an email. Oh Jen, have you tried Wegener’s Granulomatosis? they'd ask. If I had I'd reply yes, and if not, I'd add it to the list of other possible diseases I'd take to the rheum.

Then, I'd open my speech by saying, "I'm sure you've considered Wegener’s Granulomatosis, but can you tell me why this disease doesn't fit my symptom?"

If it was my trusted Rheum, he'd take a breath, brain going through a million neural file cabinets and comparing my notes to his stored data files. Sometimes he'd actually hold his breath while thinking. I don't enjoy this patient induced torture, truly, but it does make me pleased to have a smart doctor.

Generally, everything comes down to my brain MRI and my lung x-rays and that incredible LACK of elevated anything in my labs.

MRI of brain with TRaPs:




Me:




Depending on who I'm having my appointment with, I can be quite forward and say, "So, let's say this is an atypical presentation of xyz, what is the treatment?"

And believe it or not, the majority of treatments are the same.

Weight loss
Light physiotherapy
NSAIDs
Steroids
Plaquinel
Immunosuppressives
And, if you're lucky, injectable biologics.



Occasionally, like with Familial Mediterranean Fever, you might stumble on success with Colchicine, but it's very rare for a single drug to be SO effective for a disease.



When House did an episode with a father and daughter having Familial Mediterranean Fever, my diagnosis at the time, I received so many emails about it! We didn't see the episode for at least a year, but it was frustratingly amazing that the show featured FMF.



Of course, the father and daughter make a 100% recovery of symptoms after being treated with IV colchicine.

When I saw the episode, I swore off the show for the season. It was so demoralizing that a chronic, incurable condition was waved off with a magic wand of a day of IV drugs. IV colchicine is a last resort, and most patients will still have symptoms of the disease after the acute treatment. They are STILL sick, every day, because it is a Genetic condition. Not a once in a lifetime acute illness.



This is the daily battle of life with a genetic illness. There is often no reprieve from the symptoms, but like everyone else, there are good days and bad days.

At the moment, I am severely fatigued. There just is not enough oomph to force these muscles to work. It's definently a Spoon Theory day for me.

Aside from the fatigue, my muscles are burning all over. In my arms, in my legs, in my chest. I've got that heavy band feeling at the back of my head. I want to be up and active. I want to do so much more. But the burning is practically crippling at times. And then, oddly enough, it abates for a few hours only to come back.

I'm making cottage pie for tea tonight. I love any excuse to have mashed potatoes. However, there is a lot of chopping involve. I've broken it into chunks, approximately 90 minutes apart. You'd think it was a military operation, but no. That's life living with chronic impairments.

I'm feeling quite disappointed with myself in regards to my weight. Last year I felt so healthy and alive and lost about 14kg. My physio kept warning me that strenuous exercise can actually trigger inflammation in chronic illness, especially inflammatory illnesses. But, I didn't listen.

And spent months battling chronic inflammation in my gallbladder.


Mine isn't nearly as cute. However, if you're like me and you'd love to remember your organ as sweet, not painful, then try I Heart Guts.

I've never regained that mobility or freedom since. And, all those 14kg are back. High dose steroids for the gallbladder, fatigue and general, often overwhelming, fear of re-triggering all that inflammation has brought it all back.



I've made a goal of getting 50,000 steps on my stepper before xmas. I need to increase my cardio and try to get back some of my mobility. I'd also like to not feel like a beluga whale in a swimsuit.

Actual Photo of Me This Summer:

The Boob Update

You'll have to bear with me as I hack this out on one of those neon pink silicon keyboards. The power output to my laptop finally died out and we've had to throw the hard drive into an older laptop with a broken screen. Not the ideal way to operate, but at least we're operating.

So, I saw the breast surgeon who was one of the wankiest doctors I've seen. I rated him as #3 in the rude stakes. Unable to operate his own ultrasound machine, he also yelled at me for covering up before he thought necessary and then spent the last 10 minutes of our 30 minute appointment online googling for a drug contraindication I told him about when he suggested I take evening primrose oil for the breast pain

He was also 1 hour and 20 minutes late to the appointment with no apologies.

Evening Primrose Oil is somewhat effective in combating cyclical breast pain, however it has reportedly had no effect in non-cyclical breast pain. It is also contraindicated with one of the drugs I take.

And for this privilege, he charged us $175. I wish there was a rebuttal process for when you see a doctor who provides you with nothing and verbally assaults you.

Basically he said that there was nothing pathological in the boob (which we knew from the ultrasound the previous week) and said that I was a rare oddity in that I only have 2 milk ducts in my left boob.

When I spoke with my MIL about this it occurred to me that my daughter never settled on the right boob and preferred the left, probably because it had a slower flow and the right would have been so different in milk flow and quantity.

So, I really do feel like a superwoman having breastfed, mostly 1 sided, for 21 months from a boob with only 2 milk ducts.

What we learned, other than you should always listen to that predictive voice inside, is that there is nothing structurally wrong with the breast, no filled ducts, no lump, bumps or bruises, nothing wrong at all. Just pain. His sage advice was: Suck it up and deal.

Yes, because you're just a silly, silly woman complaining about some pain. Suck it up and deal. Can you imagine a doctor stating that to a president or prime minister? No, of course not. But because you're just a woman, well, suck it up and deal.

Would you pay for someone to tell you that? To your face? Me either, and yet I have to. Because he's a doctor and I was given a 'service'. I don't agree with the outcome of the service, but I will pay it. And tell everyone I know not to go to him.

Aside from the breast issue, anxiety is at an all time high here. Soph hasn't been sleeping much which has such an impact on her moods. She was prescribed a sedative, basically an anti-nausea med, but it really was helping. However, it was only helping at the adult dose, no where near as effective at the 6 year old dose. So, we only got a couple nights of sleep into her.

Last night she was acting very quiet, unable to make eye contact and lying face down on the floor, her really autistic behaviours. I tried to guess what had happened and hit upon something with her teacher.

I made quite a few jokes of the outlandish nature, like her teacher had decided teddy bears were evil and was creating a petition to outlaw teddies in NZ. That sort of just seriously random and outlandish statements to unarm her. She laughed quite a lot and in the end said that she was really scared to tell me what happened in case I was mad at her.

I asked if it involve Hamish, a really bad kid at school who she had a run-in with earlier this year. She said no, I could breathe again.

She said that she was trying to log in on the computer and she got her login wrong. Instead of SP2869 or whatever, she only typed in SP2 and her password. The computer was locking up after 3 attempts and the teacher came over to help. Some sort of disciplinary verbal exchange took place in which the teacher corrected Soph and Soph yelled at her and rolled her eyes.

Now, this sort of thing always happens at home. We call it the sassiness and we are working on correcting and replacing the behaviour, but in a child who is tired, not eating, anxious to begin with, it's hard to contain. I believe Soph was told it wasn't ok to yell at the teacher and roll her eyes and Soph felt truly awful about it.

She told me it was repeating in her head over and over and it just wouldn't stop. I tried to explain some things I've been taught to overcome ruminating thoughts, but of course, she didn't want any of it.

I made her write an apology card to her teacher and I hope the teacher sees this child is actually struggling and won't keep repeating the oft quoted, there's nothing wrong with this child; she's an angel.

We've had a referral to the child, youth, adolescent mental health care team (CAMS) and they're posting off a letter. We will likely receive it next week and I ring in to book. I don't know why it has to be this way, but it does.

Hopefully they'll be able to help us medicate this anxiety and get her into some sort of child therapy for her anxiety issues because anything I suggest to her gets shot down.

She's at a playdate today so I'm getting lots of doing nothing done. I've tidied up some recyclables that needed to be washed and sorted. Going through some old kids clothes to get onto an auction site. Some extra cash for xmas would be lovely.

Spring is here and so is the pollen. The pollen aggravates my sinuses and my myalgia is quite bad in my calves and arms. I'm just not sleeping well at all and I spend the entire day exhausted.

Thinking of investing in some herbs to trial.

Currently taking magnesium, calcium and spirulina for energy. It's better than it has been, but I'm not superwoman and that annoys me I hate life taking a back seat to fatigue and exhaustion.

Hoping he's no Boob

It's boob day.

I'm not feeling too flash today and feel really pessimistic and melancholic about it all.

I've met so many specialists who direct all conversation, don't listen, preach and then take your money, leaving you feeling alone, unheard and pretty pissed off. And I'm getting that vibe today. I don't know why.

The left boob has been so sore and that worries me. I can't sleep on it and whenever I roll it squishes and wakes me up.

I ended up taking the seroquel on night 2. I had begun to get the shakes and that buzzing noise in my head had returned. I told Matt it sucked that I feel so chained and addicted to it, but, as he pointed out, it's a med I take for a purpose.

So, I suppose I really do need to work with a knowledgeable Pdoc and find some way of keeping mental peace without upsetting the boob.

As we get closer to Breast Cancer Awareness month (October), I am seeing so much more in print and on tv about 'being aware' of symptoms, seeing your doctor, etc and it make me feel all the more that I'm going to be dismissed and shown the door.

I never should have seen the female doc. I should have gone straight to my normal GP and just gotten over the conservative side.

I found something called Myofascial Pain Syndrome that often has breast pain and inflammation. I'm going to try to ask the breast surgeon about it but I'm so used to being dismissed, I doubt i'm going to get far.

So, for now we wait.