Medical Money

It’s been an interesting year health-wise.

Long story short, I have diabetes now (which is terrible, but also means I’m already on meds that are helping my overall health, yay) and I just discovered that my fifth attempt at getting stomach surgery through the public system has been refused.

I will be getting the surgery privately, which will cost around $10,000 (surgeon + hospital + anaesthetist), and will most likely happen in June or July this year.

It is extremely exciting to finally know it’s really happening!

Some people on facebook offered to help with the cost, so I’ve set up a donation page here. I’m already very touched to see so many people helping out.

For those interested in knowing all the history of this journey…

My first pregnancy was very, very unpleasant. My hips and back were permanently damaged.

This is what I looked like before having kids (not my normal attire, but close enough :P):

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Louisette weighed 4.15 kilos (9.15 pounds; an average baby is 3.2 kilos, about 7 pounds).

Something in my chest was screwed up, meaning that every time I lost a couple of kilos (trying to get back to the healthy weight I started with) I got very sick, usually with bronchitis that started off acute and then hung around for months and months. The great news on that front is that I’ve recently discovered that REFLUX is the likely cause (yes, another classic pregnancy symptom that just never quite went away) and all I need is a course of pills to not just end the current round of coughing but to help heal my stomach long-term. Yay for pills! Yay for modern medicine!

When I realised I was just getting sicker as time passed, I decided to get pregnant with our second child so that I could get it over with sooner—and then get things fixed that could only be fixed after I was done having kids.

img_9950(Still worth it.)

During this period, someone congratulated me on my (non-existant) pregnancy about once a month. I also discovered that I was now intolerant of FODMAPs (ie, all sugars other than glucose—most fruit, most vegetables, dairy, and sweeteners), which made it tricky to eat healthily.

The second pregnancy gave me the gift of gestational diabetes (and firmly established that I am intensely intolerant of all artificial sweeteners, especially the “natural” ones like stevia), and intense, unrelenting pain. My hip would fall in and out of joint as I turned over in bed, and the back pain from spinal damage was so intense that it was a factor in my choice to have an epidural. (I still remember those pain-free hours with great affection. Yay for epidurals! Yay for modern medicine!)

While pregnant, I saw a nutritionist who was impressed with my sound knowledge of food groups and how to eat well. She told me to do my best within my food intolerances and physical mobility.

I exercised as often as I was able, but it was quite risky due to an irritable uterus, culminating in a hospital visit as TJ was almost born a month early. (For the record, this means my labour was four weeks long—but of course it didn’t hurt much during that early stage.)

TJ was induced (gestational diabetes babies usually are induced due to weight concerns) and weighed 4.325 kilos. He’s never shown any sign of damage from the gestational diabetes, thank goodness.

During the period after TJ was born, someone congratulated me on my (non-existant) pregnancy about twice a month. I went to a family event and a man I didn’t know gave me a pat on the belly and asked when I was due.

This photos were taken before and after TJ was born:

 

 

Did I mention I have a social anxiety disorder? And depression? And of course PPD (post-partum depression) because I was and am literally afraid of my kids, since looking after them so often causes back injury or panic attacks even now.

I lost the pregnancy weight (from the second pregnancy; I still had an extra 20 kilos from the first pregnancy) but then regained it as I dealt with daily migraines, chronic bronchitis, a new set of food allergies (salicylates, which neatly removed almost all my remaining “safe” fruits and vegetables, as well as all nuts and some meats), arthritic feet, prolapsed uterus, etc.

My stomach felt wrong. Different than before. Every medical professional I spoke to told me to wait, and it would get better. (Obviously, it didn’t. It’s normal for the stomach muscles to separate during pregnancy, and then mostly close up over the months after birth.) I was given “safe” physio exercises that underestimated the amount of permanent damage, and injured me even more (only temporarily, fortunately). I was told that plenty of women have babies and don’t complain about their changed bodies like I do. I was told that most mothers have a post-partum bulge, and I shouldn’t expect a bikini body (since when was I a bikini model??? lol…)

I saw a nutritionist, who put me on an elimination diet for 6 weeks. It became clear that salicylates were a problem for me… but it also nearly destroyed me cooking up to three different meals each night (I had three “safe” meals which I just ate every night, but of course that didn’t meet the needs of the rest of the family) as I catered for myself, kids, and Chris. My habit of regular exercise was broken, and I kept getting infections (throat, tonsils, chest, etc) that prevented me swimming.

Once I’d reached a truly horrifying weight, people finally stopped asking if I was pregnant. That was such a relief. I still find clothing really difficult, as even the biggest sizes aren’t designed for an enormous stomach bulge (most maternity clothes don’t fit me either, due to already being tall at 175cm).

I was not able to return to work at the childcare centre that I’d enjoyed so much post-Louisette and pre-TJ during the two months between months-long hip and back injuries. (Having Louisette actually cured my depression, but it comes back with physical pain/illness. There is still hope that if my body starts to behave, my mind will be non-crazy too.)

I had an operation that mitigated the effects of the prolapsed uterus, and I was able to work at a new job for about six months. Unfortunately standing/walking was getting more and more painful so ultimately I had to stop. Luckily my writing really took off at just the right time, so technically I was never out of work. Obviously writing isn’t the kind of job that keeps us in caviar and champagne (and besides, I’m intolerant of alcohol now)—the average full-time Australian writer earns around $12,000.

Go on, buy my book.

heartofbrasscover

 

I began to realise that salicylate intolerance had a wider range of symptoms than FODMAP intolerance (including skin rashes, irritability, and joint pain) so I decided to try to do a salicylate elimination diet to see how much of my pain/depression could be cured by eating differently (and using special toothpaste and other products—salicylates are in a bunch of things) so I slowly drew up the courage to see another nutritionist.

She and I exchanged several emails before meeting, so she was warned about my cornucopia of physical and mental conditions, and knew that I wanted help going off salicylates. Unfortunately, she decided before we met that we should ignore salicylates entirely, since it was too difficult to deal with them and eat well at the same time. So that was  a bust.

I’ll be seeing yet another nutritionist now I’m officially diabetic. Hopefully they don’t choose to ignore things that are inconvenient about me.

There is a lot of anecdotal evidence saying that fixing a separated stomach also fixes or improves a lot of food allergies. It would be awesome to be able to eat a balanced diet without it making me sick.

Another piece of good news: I am 90% migraine-free thanks to seeing a neurologist last year and working very hard to find the right medication. It’s entirely possible that with experimentation and medical assistance, I can actually reach a normal level of health for my age.

Once TJ was six months old, it was clear my stomach wasn’t going to get better, and my GP referred me to both Canberra Hospital and Calvary Hospital.

-Canberra Hospital lost the referral.

-I eventually got to see a surgeon at Calvary Hospital, who told me that my problem was probably too minor to fix and that it was out of his hands, but referred me to a CT scan place. The scan revealed that my stomach gap was 9cm wide. I returned to the same surgeon, who told me that it was too big for Calvary, and I needed to see a surgeon at Canberra Hospital. It was out of his hands. (We actually met in a room at Canberra Hospital, since this doctor works at both.)

-The scan also revealed a 2cm spleen abnormality, so when my GP wrote me a new referral for Canberra Hospital, she referred me to a general surgeon on the basis that maybe he’d want to operate on both things at the same time. When I finally saw the general surgeon, he told me the spleen thing was totally fine, showing me images to prove how it was centrally located and thus unlikely to burst and kill me (2-D images, despite the fact that the spleen is a 3-dimensional organ. I was never scanned from the side). By that time I’d had a second scan 6 months after the first, which showed no growth. So, not dying of aggressive spleen cancer. Yay. He told me he couldn’t sew my stomach back together (and acted as if the surgery was impossible, rather than referring me to a colleague who could do it), but could fix the umbilical hernia by adding surgical mesh over the gap in my stomach. I ultimately said no, since it would make the full stomach surgery more complicated and less likely.

-At this stage I contacted the health minister, and was told that my surgery would happen within three months. Wow! Unfortunately, that was still the hernia surgery, not the actually-fixing-the-primary-problem surgery.

-I looked up surgeons and found one who was both a private and a public surgeon (Dr Tony Tonks), and made an appointment with him. I figured a private surgeon would be honest about surgery, and then once he’d confirmed that the surgery was possible and useful, I’d let him know I needed to go through the public system. I did that. “I could tell which surgery you needed when you walked in,” he said. I told him I needed to go through the public system, and he told me that he was so frustrated by the lack of support for this kind of surgery that he no longer does it through the public system. He wrote referrals for me, to Canberra Hospital (to the right kind of surgeon this time), and to a hospital in Sydney where they had done that kind of surgery relatively recently.

-The Sydney hospital called and told me that they no longer do that kind of surgery through the public system.

-The Canberra Hospital apparently sent notice to my GP that they no longer do that kind of surgery. I waited nine months and then called the hospital to follow-up. After the phone rang for ten minutes, someone answered. That was when I found out that I’d been refused the surgery (sight unseen) way back in July last year.

-I gave up, and called Dr Tony Tonks’ office to begin the process of prepping for private surgery. I have an appointment for late May, and will have the surgery 3-6 weeks after that.

After all this time, I’m very excited to finally know that it’s really happening—and with a surgeon who treated me like a human being, which is a particular bonus.

 

So feel free to give me money to help me on that long road to recovery.

Several people have donated since I began writing this post.

THANK YOU.

Have a kitten.

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