Prednisone

Tact, Sensitivity & Perspective
Posted by Holly on April 08, 2012
Family, Friends, Health, Personal, Photos, Ranting / 15 Comments

When I posted my Epic Health Update for March, I mentioned that a couple of people had made unkind comments about some of the side effects of my medication. Namely, the weight I have gained.

Before I go any further, I would just like to say that BY FAR the vast majority of people I have talked to, both in person and online, have been awesome, and wouldn’t dream of saying anything so insensitive or tactless.

But. There are exceptions to every rule, and, unfortunately for me, some of these exceptions are people I know, and people I did not realise would be so…well…mean!

In the last month or so, I have had someone say to me "You used to be pretty…[until you gained weight]" and another suggest that perhaps my weight gain wasn’t a result of Prednisone at all, and that perhaps I’d just gotten fat of my own accord, and was using the steroids as an excuse.

Classy, right? I bet you can guess what my face looked like after hearing these comments. But, in case you can’t, my makeup-less and poorly-lit self has staged a reenactment…


"Whaaat!?" – "Booooo" – "Grrrrrrr!"

I wasn’t upset straight away, simply because I was thinking "Did you SERIOUSLY just say what I think you said!?" Yes. Yes they did. And to go from bad to worse, both of them knew WHY I have gained weight. They also know what sort of treatment I’m having and why, so it’s not as if they were oblivious.

After I thought about them a bit though, I was definitely upset. I mean, who wouldn’t be hurt by someone telling them "You are unattractive because you are overweight", especially when the reason for gaining this weight in the first place is not only something I have virtually no control over, but is also part of treatment for a relatively serious and stressful medical condition.

Anyway! Before this post turns into a massive rant, with accidental overtones of "People were mean! Please feel sorry for me!", I should move along to say that after talking to some people in my life who DO have their heads screwed on straight, I have gained some perspective.

I really believe that saying that kind of tactless, unkind thing to someone says a whole lot more about you than it does about the person it’s aimed at.

As much as I sometimes wish I was witty enough to think of a snarky reply, I’m glad I didn’t. It wouldn’t have helped and, knowing me, I would have felt bad later about having been rude back, even if it was "deserved".

With a bit of thought, and time, neither of these comments are as hurtful as they were. Although I HAVE gained weight and I DO feel unattractive as a result, I also know that this is temporary, and for a purpose. In a year or two, I will hopefully be back to my normal self, and, even more importantly than that, I will hopefully be in remission!

I will also have the added knowledge of who in my life is worth spending time with and emotional energy on, and who is better off being either avoided entirely, or relegated to the Casual Acquaintance box. As crap as it is to find that kind of thing out this way, over such a sensitive topic, I’d rather know than not know.

In the meantime, I’m going to try not to think too hard about what other people say about me. There are more important things to do with my life….like contemplate how much longer I can restrain myself from opening the dark chocolate and mint Easter egg currently sitting on my kitchen table! ;-)

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Super Informative Health Update – March 2012
Posted by Holly on April 01, 2012
Health, Personal / 9 Comments

Whoa – how is it time for the March update already!? Surely I just wrote the last one!?

The best thing that happened this month was…

Going back to the clinic at the beginning of the month and finding out that the treatment seems to have started working. *woop woop*

My creatinine has gone down from 215 to 193. Creatinine indicates how well your kidneys are functioning, and, basically, the lower the number, the better! Mine isn’t ever going to be normal, but the fact it hasn’t gone up is awesome. Not getting worse = good.

It’s still too soon to say how successful this is going to be long-term, but I’m happy so far. :-)

Other pretty cool things..

  • Tapering off my Prednisone dosage from 60mg to 40mg. It’s still a lot, but it’s less than it was!
  • I now have medication to support my immune system, the plan being that I avoid catching every cold and bug going around!
  • Aforementioned medication has also improved my skin. It’s still not completely back to normal, but it’s better!
  • My general health is good enough that I can work almost full time. It’s tiring, but do-able.
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The worst thing that happened this month was…

I’m still gaining weight. I suspect this might be listed as a "worst thing" every update. The amount that this bothers me, bothers me. I know it’s minor in comparison to everything else, but I want to be honest, and even though I’m a generally positive, optimistic person, this is something I’m struggling with.

It’s because this is a physical sign that something is wrong. I can’t see or feel what my kidneys are doing, but I can see and feel this, and it’s a daily reminder that I’m not "normal". I know I’ll be able to lose the weight again once I stop treatment, but this seems like a long way off.

40mg of Prednisone is still a big enough dose to cause me to continue to gain weight, though HOPEFULLY at a slightly lesser rate than before. We’ll see.

Other not very good things…

  • I’m still tired quite a lot. My life at the moment pretty much consists of working (at quite a full-on job) and sleeping, with some exercise thrown in. Sadly, I seem to have missed out on the whole Massive Prednisone Energy Buzz some people get. Or perhaps I haven’t, and I’m just using it all up by working…who knows?
  • I’ve had a few muscle aches/pain/cramps from decreasing the steroid dosage. At least I think that’s what they’re from. o.O

 

Something unexpected that happened to me this month…

Maybe this shouldn’t have been unexpected, since it’s common knowledge that there are a certain percentage of idiots in the world, but this month I encountered one of them, and they made some *less-than-helpful* comments about my illness/appearance.

I’m not going to go into detail about it, since quite honestly, I’m still annoyed, but once I’ve got my head around it and decided how to post about it, I will.

Other unexpected things…

  •  None! The first one was quite enough, thankyouverymuch!

 

The craziest thing my body has done this month…

My hands are super shaky. I notice it mostly when I write, and sometimes I can hold my hands out in front of me and literally see them shaking! My handwriting used to be really neat, now…not so much! Oddly, I didn’t notice this when I was on a higher steroid dosage, but I definitely do now! Fortunately, like the other side effects, it won’t be permanent!

Other crazy things that have happened to me…

  • The occasional "migrating eyebrow". To the middle of my face. Yeeeeahhhh….no thanks! I now stand in front of the makeup mirror every morning and night. Armed with tweezers. #strayhairsnotwelcome #senseofhumouressential

 

In other news, I recently found this photo on my cellphone. I took it during my last chemo treatment. Cutest IV ever. It has bows…and they’re even purple! I smiled. :)

Tune in again next month, folks, for the next installment of What On Earth Is Happening To Holly Now!

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I haz a happee, and why you should go and have a blood test.
Posted by Holly on March 08, 2012
Health, Personal / 4 Comments

Today, I am looking very similar to this kitten.

Went back to the nephro clinic this morning for the first time after starting treatment. Although I always knew there probably wouldn’t be much news of note since I’m only a month into a year of treatment, things were really positive.

My creatinine has gone down from 215 to 193. Creatinine indicates how well your kidneys are functioning, and, basically, low = good.

My Prednisone dosage has also been reduced from 60mg to 40mg. That’s still pretty high, but anything lower than it was is fine by me!

Doesn’t look like anymore Rituximab infusions are in my future, at least not at this point.

So although it’s still too early to say for sure that this treatment is working, it definitely looks like it is!

Back to the clinic again in 6 weeks time, so watch this space to see what happens then!

Hope your Thursday is as smiley as mine!


In other news, Happy World Kidney Day!

I used to be one of those people who thought that serious illnesses only happen to other people, never to them.

In September 2010 I got sick. I assumed I had the flu, or had eaten something bad, but went to the doctor anyway, as I was student teaching at the time and needed a medical certificate since I’d been absent from school. Some day the full version of how I got to where I am today will be up HERE, but, long story short, I ended up being diagnosed with an autoimmune disease which causes kidney failure, and at the beginning of this year I started treatment to help me avoid dialysis/needing a transplant for as long as possible. So much for the flu!

If I had not been to my GP when I was sick, and had a kidney function test, it’s very likely I still wouldn’t know that I have this disease, which is an extremely scary thought!

So yes, click here for more information about why kidney function screening is important, and where you can go to be tested for CKD. Obviously my situation is rare and it’s extremely unlikely that anyone reading this has anything to worry about, but, if you’re anything like me, you’d rather know about something like this than not know, right?

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