Category Archives: life with disability/illness

NOW THAT I KNOW..

NOW THAT I KNOW..

by admin, July 17, 2014

I know now that right now is not a good or normal feeling. I think I am prepared enough that all I need to do is rest for the evening and of course night.

So the main symptom I need to avoid getting to is shaking. If I feel like this I have definitely not prepared. Darnit. Right now being wrapped in my warm blankies with a Mr Boo and some nice tv is what is needed.

 

It’s like shivering with fever not with being cold.

Leave a Comment

Filed under life with disability/illness, Uncategorized

DAY TO DAY HEALTH UPKEEP IN THE MEAN TIME

DAY TO DAY HEALTH UPKEEP IN THE MEAN TIME

by michaela de bruce, July 16, 2014

GGgo back up to 5mg prednisome a day (compared to hydrocortisone so this is about the right dose) have it mornings not at night. Eat even though I have no appetite (though anything protein I will hoover up- hummus!) Have 2 glasses of fluids not one (one water one whatever else).
I don’t have junk food, I rarely eat lollies and I have a lot of fortified food- which has probably been a big unexpected help. (I have to do the booyeah! Dance because I even doubted and blamed myself for not having enough iron, for doing this to myself.)
I am reminded of Reaper Man, PTerry. The realities of being undead, a way to look at the marvels of the body while still alive:

It began to dawn on Windle that the human body is not run by the brain, despite the brain’s opinion on the matter. In fact it’s run by dozens of complex automatic systems, all whirring and clicking away with the kind of precision that isn’t noticed until it breaks down. He surveyed himself from the control room of his skull. He looked at the silent chemical factory of his liver with the same sinking feeling as a canoe builder might survey the controls of a computerised super-tanker. The mysteries of his kidneys awaited Windle’s mastery of renal control. What, when you got right down to it, was a spleen? And how did you make it go?

His heart sank.
Or, rather, it didn’t.
‘Oh, gods,’ muttered Windle, and leaned against the wall. How did it work, now? He prodded a few, likely-looking nerves. Was it systolic . . . diastolic . . . systolic . . . diastolic . . .? And then there were the lungs, too . . . Like a conjurer keeping eighteen plates spinning at the same time – like a man trying to programme a video recorder from an instruction manual translated from Japanese into Dutch by a Korean rice-husker – like, in fact, a man finding out what total self-control really means, Windle Poons lurched onwards.

I may completely adore the Discworld and there is always a quote for every experience. And different viewpoints. And it is all awesome. Super sad my collection is a sooty dried out falling apart mess. I haven’t the heart to throw them out though. I just can’t.

Leave a Comment

Filed under life with disability/illness, Uncategorized

NOT IRON, NOT B12, BUT CORTISOL. BUGGER.

NOT IRON, NOT B12, BUT CORTISOL. BUGGER.

by michaela de bruce, July 15, 2014

So I don’t have a proper diagnosis yet but I did get the results back from my various blood tests. All were normal except the cortisol and synacthen tests.

These may be suppressed due to the current steroid use (as in we can’t separate the long terms effects from what prednisone does while still on it) or could be something else or even another auto immune issue related to my RA.

The blood result doesn’t explain my daily fatigue but it does have implications for a flare up of disease activity (which I knew) and when ever I have an infection (which I keep forgetting about except in line with my sinusitis) and stress (which I really did not associate it with.)

There is a risk of an adrenal crisis in those situations so I have in fact been really flirting with disaster for the last few years. I knew I felt bad, but I didn’t really associate it with being treated by more steroids.

So my reluctance to use higher doses may be having a deeper impact than I realised.

This does mean I’m going to have to put a plan in to action because my “crashes” I have experienced not only look too much but now have a little bit of blood work to support the idea that they are in fact serious. With my iron and B12 being good (OMGYAY!!!! Fortified foods FTW!!!!) there isn’t really much left to look at.

The registrar I saw was wonderful. Seriously lovely and she had clearly really looked in to my case history and even contacted my specialist, and I will have to see him in the next few weeks. Basically I need to go off my steroids for as long as possible and repeat the synacthen test. If I can. Also getting ACTH levels checked and serum aldosterone. I think I may be lucky that this is all not at crisis levels but like I said I have not been accounting for this in high stress situations, at least not enough, and I’m not sure how often I can do that.

Meanwhile I have been put in the system for a a rhuemy and endochrinologist.

 

So tonight is a bit of planning and finding some solutions. Basically I don’t want to get into a crisis even if I may have really flirted with is a few times. Like at D*C or WellyGeddon last year and even after WellyGeddon this year. The registrar said I should just go to hospital when I feel like I do in a “crash”. I kind of sort of knew this but kept telling myself it was probably low iron/B12 so while horrible to deal with not actually very serious.

So. Pants.

 

But on the upside I have found a level of medication that helps me avoid anxiety stress, and reduces muscular pain as well, so at least I’m not going to cry myself to sleep.

Leave a Comment

Filed under life with disability/illness, Uncategorized

[redacted]

[redacted][redacted][redacted]

My wrists might be slightly embuggerated. By slightly I mean the inflammation is spreading to my fingers and I really ought to take something to stop it.

The only thing to do that is a nice high dose of steroids. We are’t talking pain relief now, we are talking barricades and trenches and an offensive not defensive play.

[redacted]

[redacted]

So yes. Also needing to think long term again.

On the upside my immune system is distracted from allergies?

What the [redacted] body. I mean really.

Leave a Comment

Filed under life with disability/illness, Uncategorized

Not too well

Not too well

I went to the mall last night, on  a big ass straw search so I do not panic in the alginate, and too look for perfect shoes to make over for Battle Maleficent (so many terribly designed shoes- I have a high instep but a mid level arch and if my arch sits over the side of the shoe there is something off.)

Got the former but not the latter. And pretty soon after I stopped being able to walk. Well not without help. So my stress hormones are a tad out of whack dealing with pain which meant no sleep.

So this fine winter morning shall have to be spent catching upon sleep and warming up before even looking at any activity.

2 Responses to “Not too well”

  1. Zeb A. / 4 Jul 2014 9:34pm #It’s a good morning to stay warm and rest HGUS

    Reply

    • admin / 5 Jul 2014 8:41am #And I did the same today. It was so good. I may just have to let my sleep pattern shift around a bit :)

      Reply

Leave a Comment

Filed under life with disability/illness, Uncategorized

Not too well

Not too well

I went to the mall last night, on  a big ass straw search so I do not panic in the alginate, and too look for perfect shoes to make over for Battle Maleficent (so many terribly designed shoes- I have a high instep but a mid level arch and if my arch sits over the side of the shoe there is something off.)

Got the former but not the latter. And pretty soon after I stopped being able to walk. Well not without help. So my stress hormones are a tad out of whack dealing with pain which meant no sleep.

So this fine winter morning shall have to be spent catching upon sleep and warming up before even looking at any activity.

2 Responses to “Not too well”

  1. Zeb A. / 4 Jul 2014 9:34pm #It’s a good morning to stay warm and rest HGUS

    Reply

    • admin / 5 Jul 2014 8:41am #And I did the same today. It was so good. I may just have to let my sleep pattern shift around a bit :)

      Reply

Leave a Comment

Filed under life with disability/illness, Uncategorized

Not health, or health that isn’t

Not health, or health that isn’t

I have slept for 36 hours and am still exhausted. So… I’m not entirely sure if I will be going anywhere any time soon.

I have had my sinuses cleared officially, finally. Letter from the hospital: no growths or polyps (noice…). That said I must now be flur free because my nose is back to being too dry.

But another letter from the hospital for another visit next month so I need more blood and pee tests (whee!) and another letter from my GP for my last Hep B vaccine. Which may have to be next week as I’m not convinced I am virus free.

Anyway, my Take My Stuff day is organised and I have enough brain to wave to piggy butt (piggy bank has his slot in his rump) and say “yep take that” or “hang on I think I am still working on that….” So as today is sunny I’ll try and make use of it. No doing anything that requires full brain because I am drifting in an out of focus. You have no idea what word salad is happening on screen and behind my eyelids….

I think it’s the lovely iron depletion and non restoration because it’s hard to get a good breath. So everything feels like it’s after a big run.

 

Leave a Comment

Filed under life with disability/illness, Uncategorized

So actual Maleficent movie thoughts

So actual Maleficent movie thoughts

They are… complicated. But that is fine. I feel very ambivalent* about everything I watch- always looking at why I like or dislike or feel uncomfortable about things.

(Addn: this is just one facet of identifying- and I have tried to not frame things as “I r spechul snowflake” but that on this single level the movie affected me deeply; emotionally and vicerally. It’s what I can talk about directly and in public. I also did not identify with everything about the character because while I can dislike and feel anger I have yet to want revenge. But I do also identify with the accidental caring and wanting to protect “beasties”. As I wrote above: ambivalent. Not uncaring but pulled in many directions.)

I did identify a lot with grown up Maleficent. And the loss of the wings meant something very different to me than intended I think.

Okay, it has come out the scene is a metaphor, it is not over reaching as some reviewers have been accused of. And I got that, but the howls of anguish she lets out were visceral and really affected me deeply.

Often when we cry it feels very much part of the body, you feel your face and eyes and chest as the pain just wracks your body. But then there is howling. And it feels different. You feel disembodied and that you are eavesdropping on someone or something else.  You don’t know when it starts or when it stops and you can’t actually feel it, until after.

I howled, not raged, not wept, but howled when I was diagnosed. I knew what it meant. Autoimmune diseases were what I had previously studied at a compartmentalised distance so I understood the complexity and how it was never going to be better. The disease was taking away, not giving and what was taken would never be returned. And it was taken.

It was not just my dreams shattered, I’m pragmatic and change whether I like it or not, but also on a very mundane level it means I have to have care in many day to day mundane and humbling/humiliating ways. It changes day to day, month to week, year to year, but I know the minimum to expect when I am older.

Yes, since then I live and cope and often thrive in spite of it. And I do not live with regret and I mostly live without self doubt or being bitter and resentful.

But I still howled, and my heart aches when I hear it in fiction or reality because to go that far means you have been pushed that far.

 

So, plot, story and other elements aside, I did identify and appreciate a lot of the character at least.

 

*The fact that the term was spelled out in Girl, Interupted is not lost on me.

Leave a Comment

Filed under life with disability/illness, Uncategorized