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Oct. 18th, 2014 09:19 pm
jeshyr: Blessed are the broken. Harry Potter. (Default)
Status report ... mostly health stuff )

Can't think of anything else just now. Despite all the above health crap I am basically happy and doing OK emotionally.

r
jeshyr: Blessed are the broken. Harry Potter. (Default)
This is an update to go with my End Of 2010 Thoughts post.

I had to make notes for an upcoming doctor's visit so it's not as much expanded as it could be, but I think it makes sense...

My energy and general abilities are down significantly compared to 12 months ago. For example:

a) Was able to sit out of bed 2-3 hours/day. Now 0-1 hour/day.

b) Was able to walk outside briefly. Now inside only.

c) Was using hospital bed with the head raised to around 40 degrees from horizontal during the day. Now more like 20 degrees on average.

d) Exercise routine was 30 minutes physio including 6-8 minutes on recumbent exercise bike, or ~200m at pool. Now able to do 10 minutes of physio including 4-5 minutes on exercise bike, no swimming.

e) Was able to go out 1-3 times per week including some longer trips. Now 0-2 times per week short trips only.

f) Brain was functioning well enough that I was doing some programming again and some OpenUniversity lectures early this year. Can't do this at all now and have had to stop programming.

g) My allergy symptoms have been getting steadily worse all year despite allergy meds. This is being seen to but it's yet another problem I have to deal with.


I'm not nearly as bad as I was before 2010, but I'm definitely on a downhill patch. It's depressing and a bit scary and a lot frustrating, as it's been gradual but apparently inexorable. I don't know what's causing the decline and so I don't know how to stop it. I hate being helpless!!

(Note: Please don't point out how much better I am than the worst, or anything about gratefulness. I know I'm better than then and I am grateful - hugely grateful - that I'm this healthy. Being grateful doesn't stop me from also being frustrated, sad, or scared that I'm in this position now though. I just find it quite upsetting when I say "i'm scared/sad/frustrated" and people say "be grateful!" because it feels like they're missing the whole point)

Love you all,
r

Update...

Aug. 28th, 2011 12:07 am
jeshyr: Moonscape, with the earth rising behind it (Earth)
Lots of stuff!!! Here are some highlights ...




Have started hacked for Dreamwidth! You can see on the latest code tour that my first two tinsy tiny patches have been accepted and since we just recently had a code push they are now actually being used on this very Dreamwidth you are now using!

Getting started coding doing code for Dreamwidth is a huge task. Without the wonderful Dreamhacks run by [personal profile] sophie and the Dreamwidth Wiki and the very very kind help of numerous people on IRC I would have given up. I am feeling extreme awe and admiration for newbie coders who manage to get started - I haven't coded (much) for a long time but I am familiar with the general gist of things and comfortable with a command line and even I got so overwhelmed and frustrated that I nearly gave up. Those who started with less initial knowledge than I did and have managed to get themselves coding are really impressive to me!

In the name of saving my own brain from terminal overload I created a script that does a bunch of the routine "house-keeping" things for me and also has a good help function for the inevitable when I forget how to use my own script. I wrote it partly as a self-teaching aid but it ended up being quite useful so now we have Ricky's DW Do-Everything Script available for anybody who's interested in using it. Hopefully this slightly reduces the difficulty of getting up and running for the next crop of newbies!




In less virtual news I've been gardening a lot this week as the weather's suddenly flipped from "mostly winterish" to "mostly springish" and my brain has demanded that I muck around in the dirt. Actually I've been doing it to the point where it's a bit detrimental to my physical health so I'm trying to self-monitor a bit better about that.

This morning a bunch of kids who live around popped up and asked me all sorts of questions and I got to answer some fantastic things like what dirt was made of and why I couldn't grow an apple tree in the tiny 1x1m shaded plot. I really enjoy kids!

Also I am waiting quite impatiently for a $60 order from Diggers to arrive so I can plant more things.




Saw my EDS specialist on Monday. He wants me to increase the Midodrine (the orange tablets I call "magic pills", for those of you who know me RL) from 6 per day to 8 per day. I've been doing this since Monday and it seems that it's letting me somehow overdo it - I've been quite ill almost every evening since and had two of my weird "digestion attacks" which I know are more likely when I've overdone it. Not sure what to do about this but I'll play around with the timing of the doses to start with... does anybody want to draw half-life-type graphs for me?

The EDS specialist also wants to get me fitted for a lower-body Jobst Garment with high-level compression and an abdominal binder. These are the very tight/strong compression garments worn by burns patients and people with Lymphoedema, like "surgical stockings" but even stronger. The main garment will probably be like a pair of pantyhose and then the abdominal binder will go over the top. It sounds very strange but if you think about it these compression garments are trying to do the same thing that the Midodrine is trying to do: squeeze the blood up to where it belongs. The Midodrine squeezes the blood vessels by chemically triggering them to contract in the same sort of way that caffeine does. The compression garments will squeeze the blood vessels directly by squeezing all of my lower body.

From what I've read many people do find these helpful but they take a lot of energy to get on and they're not very comfy to wear. The other alternative is a G-suit (yes, G-suits are used for this!!) but those are hard to come by. Anybody have contacts in the Australian Defence Force - I figure they could make it a cool charity/media type thing to give me one :)




Last thing: Foster cat Peggie has been adopted! A wonderful couple came and played with her and have adopted her, they were really nice and I think she'll be happy. Anekin misses her a lot and has been very sooky this week.

That's all for now - how have you been?

Cheers,
r

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jeshyr: Blessed are the broken. Harry Potter. (Default)
Ricky Buchanan

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