Aussie suffers get PBS boost for urinary issues

Lost in the RU486 announcement was the following:

The PBAC recommended extending the current Section 100 Botulinum Toxin Program listing for botulinum toxin type A to include the treatment of urinary incontinence due to neurogenic detrusor overactivity in patients with multiple sclerosis, spinal cord injury or adult spina bifida, who meet certain criteria, on the basis of acceptable cost-effectiveness compared to best supportive care.

Now, I don’t know what is the comparative best supportive care, but this has got to hoe good news, right?

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Swank(ish) diet gets thumbs up

My conservative GP sent me to the dietician. I ‘chose’ to be gluten free and have chosen to follow some hippy diet to cure my MS.

Ignoring the judge mental undertones, I explained low sat fat to the dietician. I also explained that I will continue to eat low fat red meat due to underlying anemia. She had never heard of swank. But there was nothing wrong with fish a couple of times a wee, or eliminating sat and trans fat. The vitamins (fish oil, iron, cranberry, vitamin d) are all sensible. But she wanted to do research.

Well, for those of you sitting on the fence: there is nothing wrong with Swank. My dietician would like me to eat whole eggs (protein) and lite cheese (calcium). But eating red meat 3 times a week is fine – make it lean and make it count. Oh, and she understands that some of us have bodies that know they are intolerant (for me it is gluten) without the auto immune disease or allergy.

So, even if Swank doesn’t cure your MS, it can’t hurt. What are you waiting for. Think about what is more important, that piece of xxxx or staying out of a wheelchair.

RIP Chrissy Amphlett

We have just mourned Annette’s death and now, the voice of my teenage and early 20s is gone. Chrissy Amphlett, lead singer of Divinyls fought her battles with Multiple Sclerosis and cancer as she performed on stage. With attitude. I am sad for her, her family and her fans. I am also sad for all suffers of MS, this insidious disease who somewhere, in places we don’t admit to, see our future.

RIP Chrissy. Your light shone bright. Your music will live forever

My cup is half full(ish) even with RRMS

Most of my posts have been about my emotional ride through RRMS diagnosis. I have been sad (very sad), in denial, had a little anger at my body and definite frustration.

But today, I am feeling good. Having RRMS, and a healthy dose of stubbornness and denial, I have changed things to give myself a chance.

Lower stress.

Diet.

i have pulled back from being as involved in the local soccer club. Weeks of preseason stress relating to grading all gone.  I am culling crap in my life. Clean desk, aiming for passes instead of distinctions. Housework – well my house is patient and if I don’t get to it today, it will wait. I am also taking at least 15 minutes 3 times a week to have lunch in the sun. Gotta love that Vitamin D.

Diet – well a Swankish approach has dropped me from a big size 14 to just buying a size 10 suit! Got to be happy with that. Giving up saturated fat meant giving up hot chips, BBQ chicken, plain salted chips or corn chips, pop corn and the like. 6 kilos lighter. Drinking more water, started to replace one or two meals with seafood – which I do not like, but doing it anyway. Because of my anemia, have not and will not give up red meat. I only use low fat cuts and cut off all visible fat. Tat will be my only voluntary saturated fat.

Insomnia is still my curse, but I am practicing breathing and taking time to enjoy the life I still have. I have dropped my baby fat (my baby is now 8) and strutting new jeans.

I value life. I am going to live and love life. While I can. Not taking anything for granted. Ever again.

Drop down a gear and keep going

Sporting analogies are appropriate in a lot of circumstances. Today I was cycling with 11 year old ds. I was getting tired and the way home seemed a lot harder and more uphill than normal. I told him to go ahead. 

DS said than uphill is part of cycling, I don’t have a choice if I want to get home. Just chuck the bike down a couple of gears and keep going. He said that if it gets tough, just go down a gear and it will seem easier. It might take longer to get home, but I will get there.

Out of the mouth of a babe. So if life is a long game, we will have uphills that are harder to climb on some days. Rather than give up, let us all just chuck it back a gear or two, take it a little easier but get there in the end. No matter where or what ‘there’ is.

Focusing on what I can control – Diet

A few years ago, I was tired. Really really tired. Several months, blood tests and a ‘top and tail’ later, I am not coeliac. But I am anaemic as well as having pernicious anemia and Graves’ disease. Two of these three are autoimmune. None can be cured.

but, stubborn little thing that I am, I googled. And googled, and researched. Sound familiar? Apparently, soy can trigger thyroid issues, so I switched back to cows mAlmost here is also a school of thought that gluten impairs the body’s ability to absorb nutrients. Such as vitamin b12 and iron.

So despite coeliac tests being negative, I gave up gluten. There were tears. Ceremonial saying goodbye to favourite cookbooks and recipes. But I did it anyway.

A funny thing happened. The chronic abdominal pain went away. The constant bloating went away. Immediately. I was one sausage sizzle away from the bloating and pain. I know, I did tests. Then another thing happened. My Graves went into remission. Doctors say you can’t be cured, but I have been normal for 7 years. And I have gone from monthly b12 injections to once a year. Iron is still a problem.

oh, and I had a relapse 12 months before I gave up gluten. It took another 8 years for my next. 

I don’t know whether gluten was a factor. But I have learned to live without it. All the diet advice for MS suggests healthy living, low sat fat, more fish and minimal to nil processed foods. So, any time I want hot chips, I figure I can have all I want when I am in a wheelchair. But not today. Same with chocolate, cream sauces and cakes. We have all read about the strict diets. I can’t give up meat. Given my inability to absorb iron, that would be dumb. But I am replacing 1-2 meals a week with fish.

I am a living experiment, but aren’t we all.