Ricky Buchanan ([info]rickybuchanan) wrote,
@ 2008-07-12 00:26:00
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Busy!
Have been busy with many things. Here are a few I wanted to share:

I have proudly been featured in a guest post on the Hoyden About Town blog - a place I love reading. [info]lauredhel kindly adapted an email I shared with her for the post, so I didn't even have to do any work! The post is: Advocacy is Inaccessible for Some People With Disabilities. It's about accessibility for those who are bedridden or housebound, which is something I'm passionate about for the obvious reasons!

I have been doing behind-the-scenes work on ATMac and not one but TWO other seekrit web projects that I shall not yet unveil. Thanks to assorted people for help with those, BTW.

I started on the medications for the Marshall Protocol. Unfortunately I got so sick from them that the doctor decided it was too dangerous to continue (I would have stuck with it for a few more weeks, even though it was miserable - much easier to cope with stuff you can control the end of). So I'm recouperating and getting my strength back so we can try the same thing by an alternative route which hopefully is less dangerous.

I have been working on RL gifts for my Mum's 60th birthday and a "just because" gift for a friend who recently moved to England. Both gifts unfortunately suffered unrelated tragedies which have set me back several weeks. Grrrr. ... it takes me long enough to get stuff done in the normal course of things!

I got a wonderful wonderful WONDERFUL knitted hat from [info]splodgenoodles and I have been sorely slack about getting it photographed and showing you all. But I have been wearing it almost every night - the low around here was 3.6C (48.5F) a few nights ago and it's been bitter cold. This is a place that usually never reaches freezing BTW, for those who don't know Melbourne. So this is very cold for us!

Been working on i-access committee stuff for Vision Australia which continues to be a big challenge access-wise and also something that I feel is really really useful.

Can't think of other stuff just now. So much I want to write, so little energy to write it... For anybody who wondered, triaging one's activities this much TOTALLY SUCKS.


r

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[info]owlcatowl
2008-07-11 02:38 pm UTC (link)
I started on the medications for the Marshall Protocol. Unfortunately I got so sick from them that the doctor decided it was too dangerous to continue (I would have stuck with it for a few more weeks, even though it was miserable - much easier to cope with stuff you can control the end of). So I'm recouperating and getting my strength back so we can try the same thing by an alternative route which hopefully is less dangerous.

dude. srsly. plz be taking care out there.

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[info]rickybuchanan
2008-07-11 02:44 pm UTC (link)
No fear, I always take care. I just meant that ... well, I've been that sick before just from the disease itself. If spending a few months like that meant that the time after would be better than I am now, it'd be worth it...

I wouldn't do stuff my doc said was dangerous. I'm not that dumb, I hope!

Thanks
r

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[info]owlcatowl
2008-07-12 08:48 am UTC (link)
I wouldn't do stuff my doc said was dangerous. I'm not that dumb, I hope!

i wasn't saying you were.

i just hate mr marshall, think the MP is unwise and i'm going to be upfront about that to you right now.

my feelings around M + MP have no impact upon my feelings around you.
ax

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ps, just because.
[info]owlcatowl
2008-07-12 08:52 am UTC (link)

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[info]acelightning
2008-07-11 03:01 pm UTC (link)
oh, i'm so glad to hear from you, little penguin! *hugs*

the Marshall Protocol sounds a bit scary - i'm not sure you ought to have taken drugs that lower your blood pressure. on the other hand, it should be very easy for you to avoid sunshine ;-) anyway, good luck with the other version of the treatment.

nothing much has changed here. more *hugs* to you!

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[info]obscenely
2008-07-12 02:14 am UTC (link)
Not to hi-jack Ricky's journal, but (I am also on the MP), it has been shown that Olmesartan/Benicar has no effect on blood pressure beyond the normal one tablet a day - it does have an effect but it's usually minimal. & yes I was worried about Ricky's BP as well as if you can't go from lying to sitting without great difficulty then it is already too low.

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[info]acelightning
2008-07-13 10:34 am UTC (link)
that's why i mentioned it - Ricky has had issues with low blood pressure since she first got sick. i keep wishing i would win the zillion-dollar lottery prize, so i could fly her to the US (it would have to be a privately chartered plane, with special equipment and a bunch of doctors and nurses on board) and have her seen by every doctor who's working on mystery diseases...

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[info]obscenely
2008-07-13 10:35 am UTC (link)
Well until then, we share the same Doctor (Ricky & I) & I promise you that he is absolutely amazing.

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[info]acelightning
2008-07-13 11:44 am UTC (link)
i am very glad to hear that! (what's the use of a doctor who isn't good at his job, after all?)

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[info]obscenely
2008-07-13 11:49 am UTC (link)
Exactly.

Unfortunately it's a bit too common where CFS/ME is involved :-(.

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[info]acelightning
2008-07-14 07:47 am UTC (link)
most doctors are little more than "auto mechanics for the human body". they know how to set a broken bone, or treat an infection with antibiotics, or remove and/or repair a malfunctioning organ. they only know what they see, either with their own eyes, or with x-rays and tests. given an assortment of subjective symptoms like pain, weakness, and fatigue, with nothing obvious that shows up on tests, they don't believe the problem is "real". it takes a doctor with training and experience well beyond the garage-mechanic level to do anything useful with mystery illnesses.

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[info]obscenely
2008-07-14 11:38 am UTC (link)
Yup. Most Doctor's are like that maths teacher you had that had to check his teachers text book for everything. Until they get older.

My regular GP is a lovely older fellow who I've been seeing for 20 years (since I was two) and he is amazing. He diagnosed a bowel problem caused by anxiety by jsut touching me, where as the Doctor I saw before him (a young Doctor) wanted to send me to get checked for STIs?? I knew that was wrong which is why I went to my normal Doc (who was unavailable at the time before).

Blabbing. Nice chatting though. :)

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[info]acelightning
2008-07-15 02:39 am UTC (link)
you're probably going to see Ricky in person long before i get another chance to, so when you do, please give her an extra hug from me!

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[info]obscenely
2008-07-15 03:11 am UTC (link)
I will!

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[info]hopeforyou
2008-07-11 05:16 pm UTC (link)
I started on the medications for the Marshall Protocol.

Wait... The Marshall Protocol? Really?

Because that's a treatment plan a lot of Lyme Disease people try. I haven't heard about it being used for anything else, to be honest.

Everyone I've heard of who has tried it has said it's harsh and doesn't work for them, and the science behind it is iffy. What are you trying to achieve with the plan?

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[info]obscenely
2008-07-12 02:19 am UTC (link)
Again Ricky not to hi-jack your journal - but the main thing it's used for is actually sarcoidosis. There are a lot of Lyme & CFS patients on there as well as many other chronic illnesses.

It can be harsh (it definitely is on me and obviously was on Ricky), but you have to stay on it years to see if it works (2-5 years depending on how ill you are) so only a handful have completely finished it. The aim of everyone who goes on the MP is cure.

I'm just trying to save Ricky from some explaining :).

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[info]yinepusayi
2008-07-11 05:24 pm UTC (link)
I'm just glad to hear from you again dear. What's going on in my life in a nutshell is I'm still recovering from turning 30 (on July 3), getting over a very nasty cold and trying to keep cool during these very hot days with no a/c and only small fans to keep us cool

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[info]dadi
2008-07-11 06:01 pm UTC (link)
I didn't know you were on the Marshall Protocol! My doctor has been on my case for some time about trying this out, because I suffer from several TH1 diseases. I chickened out from it until now because of the side effects and the light problem.. I could not continue my work with it. I am following all the research about it and keeping updated, because I really think there is something to it, and probably I will try it if things get worse with my intestines for sure!
I hope the alternative version will work for you! *hugs*

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[info]obscenely
2008-07-12 02:04 am UTC (link)
Heh, I just read your comments, welcome to being on the MP!

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[info]obscenely
2008-07-12 02:20 am UTC (link)
PS. Feel free to yell at me for replying to your comments if you like - just wanted to save you some typing.

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[info]crypticgirl
2008-07-12 02:28 am UTC (link)
I meant to email you earlier in the week to say just how fabulous your advocacy email is, but life got in the way so here I am.

Also: don't be intimidated by Sharon. She's my old boss, and one of the least intimidating people I know. She's also very keen to make things as accessible as possible for as many people as she can.

If you haven't suggested it to her already, ask her to put your open letter into the DARU Update - that goes out to nearly 200 advocates and government people around the State.

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