no more CRABS

Greetings. I’m back. I trust you have been well, and that you will put me back on your reading list. I think I have something to say now that is worthy of sharing. Here’s how it goes.

About a month ago, my three-times-a-week injection of Rebif started to hurt, to the point I could hardly bear it. So I stopped. My neurologist said fine, take a week or so off, and we’ll talk about an alternative, another of the CRABS to replace it. I started looking into Avonex, Copaxone, etc., and what I saw in their ads in The Motivator was side effects – depression, muscle stiffness, swelling, infection, nausea, anxiety, etc. I’ve been having my liver function tested every few months, since the drugs I’ve been taking are hard on the liver. It all seemed like a strange choice to make. No one, not even my neuro (whom I respect and trust) could tell me that these drugs were, bottom line, doing anything at all. They might be responsible for fewer exacerbations, or maybe that was the natural progression of the disease in me. I was told that I might as well take the injection, since it might be doing some good. But since it was doing some harm (slightly depressed liver function), that argument seemed sort of a moot point. The balance wasn’t even – maybe some good, probably some bad. The liver function tests definitely showed negative effect, but there was no test to see if Rebif was going any good. The only way to know was to stop using it. And even then, whatever happened could very well be simply the natural progression that would have occurred without the drug.

Anyway, what it has come down to for me is that I am saying no to CRABS. The marketing for these drugs all talk about using them as a way to take control over the disease – which makes no sense to me at all. (Warning – rant approaching!) By accepting what a drug company tells me is the only way to deal with MS, and that I have to adhere to a rigid course of medication, I am not taking control of anything, but rather submitting to the external control of the drug company and, to a lesser extent, the doctors who prescribe. Both of whom are making plenty of money from this transaction.

The alternative – and I don’t like that word for several reasons – is to refuse to take part in that form of taking control, and to REALLY take control of the disease by taking control of my health in general. I had looked into the Swank Diet when I was first diagnosed, and dabbled in it a little, and decided it was too restrictive and too hard, and gave it up. But now that I am dissatisfied with the CRABS regimen, I’m taking another look at it. Far from being an “alternative,” it is very basic and sensible and primary, and may even pre-date the CRABS. Eating this way is better for anyone’s health, MS or not, and so it is hard to argue against as a better way to eat.

As for it’s efficacy in treating MS, there has been the argument put forth by The Medical Establishment, including the NMSS and my neurologist, that there is no hard clinical data to support the Swank Diet. Dr. Swank has been advocating this diet for some 75 years, and people have been using it with what looks to me to be remarkable success. True, not a clinical study – but the more cynical of us would suggest that those with the financial ability to make such a study (drug companies, NMSS, etc.) have every reason not to do so. I read sites like John Pageler’s Home Page for additional enouragement.

Anyway, (let me catch my breath) here’s where I am at. I have not stuck a needle into myself for a month or so, and I’m very happy with that. I don’t plan to ever do it again. I’m happy to get away from all the waste (needle disposal, plastic packaging, all those little Styrofoam shipping coolers, etc.) and cost (alcohol swabs, cotton pads, the medication itself). I do plan to sit down (as soon as I post this) and start putting together a dietary plan that will take effect right now. When I finally quit smoking for good about a year ago, I remember telling myself that I simply couldn’t do it any more. It was so obviously not good for me, there was no way to tell myself I could get away with it. The same applies here. If I want to have any hope of keeping myself out of a wheel chair, this is what I have to do. Maybe I’m making it sound a little more dramatic than it really needs to be, but right at this moment, it feels very dramatic.

So One Life is back. I’ll most likely be posting thoughts and experiences relating to this adventure as they come to me. And I’ll try not to rant too often.

I’ve been keeping up with my photography site Two Buddhas in Conversation, which I hope you will take a look at, and leave a comment. It is, after all, all about me.

Now playing: 1958 (Skalpel)

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5 thoughts on “no more CRABS

  1. Your Rant is not uncommon. I’ve abandoned medication for a more realistic aproach. The pain of reactions and various side effects was just too much for me. Weight of the cure was greater than the weight of the disease.

  2. I, for one, definitely appreciate your alleged rant! If speaking one’s truth constitutes ranting, then I am a “ranting lunatic” myself…
    I stumbled upon your blog and hope to return soon to read more. Thanks,

    Linda D. in Seattle

  3. Good to see you back blogging and better to see a great rant! Good on you for taking a different approach that will work. With all the unknown MS brings to us all, it’s good to feel the stabily of what we ourselves bring to the table instead.

  4. I appreciate a good rant! I would have to agree with you when it comes to diet. I am not sure that it is necessary to spend a lot of money into any particular one diet, but if that helps…than great! I personally worked closely with my endocrinologist after my liver suffered some damage (also due to a medication I was on) and because of his recommendations not only has my liver function returned to normal, my parents who have since started the diet both have reduced their blood sugar and cholestoral readings. Basically it is just a balanced diet.

    I also recommend trying to exercise. I have recently started going to a gym and doing low-impact weight baring exercise along with swiming. To be honest I am usually in a bit of pain for a day or two after I have exercised, but with each time I seem to be feeling much better. I think there is a lot to be said for this…and getting better control over our health is going to be a key component.

    I too have been ranting of these things on my blog…so don’t ever feel bad about ranting, after all, you are entitled! I hope you continue to do well. Please take care. If you don’t mind…I would like to blogroll you. Please let me know.

    Jaime

  5. Go for it Stephen. I too questioned the validity of the CRAB’s. I kept asking my neuro what 30% efficacy meant. Different things to different people, was the reply! I then asked my PCP. The reply was, it works for some and doesn’t work for most. I felt that was the closest match to my take on the whole thing. I would probably be more accepting of it if I were not already a mature person. Luckily I was not a young adult upon diagnosis. And I would never presume to tell anyone that doing nothing is a better way. Diet is so important and exercize is equally important whether you do the CRAB regimen or not. I was born happy and I like to be happy and the first thing to scare me about any of them was that side effect called depression.

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