Friday, December 7, 2012

I Figured it Out

It's been like forever since I last posted ... basically, because I felt like I didn't have anything else to say.  The last time I wrote here, it was to give an update on my health situation.  I was hoping that with a diagnosis and new treatment, I'd get back to my old self, and be able to write about how great life can be ... how we can all find the strength to get through the rough times, how there's always a silver lining, and how we can embrace change to become the buttahflies we're truly meant to be.

Unfortunately, I'm still struggling.  Since my last post, the doc has added another diagnosis (fibromyalgia in addition to the autoimmune arthritis), and she says it'll probably develop into something else later.  I'm up to 17 pills a day, one injection a week, and an infusion ever month ... and I'm still in pain every day.  Still exhausted all the time, and still nauseous more often than not.  I move in slow motion in the morning, and I'm lucky if I can move at all by the evening.  I have to avoid the sun at all costs, and I have difficulty breathing in the cold.  I've got to take extra precautions to avoid getting sick because my compromised immune system can't fight any infection.  I can only have minimal alcohol and caffeine, and I can't even get any more piercings or tattoos to make myself feel better!

To put it simply, this sucks.  

I've had my share of pity parties since this all started.  I've screamed, I've cried, and I've sulked alone in my room.  Like most people struggling with chronic illness have done at some point, I've tried to figure out why.  Why me?  Why did I get stuck with this awful disease that (won't kill me but) has no cure, and will only get worse as time goes on?  Well, I think I've finally figured it out.

Saturday, June 30, 2012

Long Overdue Update

Yes, it's been a while, but I'm following the lead from my last post, and not apologizing for that.  I said I'd write when I could, and now I finally can ... so I am ... and we've got lots to catch up on!

I'll start with the easier part ... work.  

The past couple of months has been my crazy-busy season, with most weeks including a few 12 (or more) hour days and most weekends filled, too ... so there really was no time to sit and write.  Luckily, I love what I do (ok, I guess it's not really luck since I specifically chose to do this), and every day I get to see the positive impact it has on people who need our support.  Fortunately, though, Relay season is over now, so I can finally start to take a little time for me ... something I really need, now more than ever.

Now for the not-so-easy part ... my health.

Sunday, April 22, 2012

Checking In

So ... here's a first for me.  I'm not going to apologize for not having written in so long.  I mean ... don't get me wrong ... of course I feel bad if you've been waiting for my next post.  Of course I wish I'd written more often.  But you haven't just been waiting around, have you? No ... you've been living.  And over the last month or two, though there were a number of things that I wanted to write about, I just didn't have the time.  You see, I've been so busy doing things that I just didn't have a minute (or a few hours) to sit down and write about them.

In the past, when I went for a while without writing here, it was usually because things were going poorly for me.  I was upset, hurt, frustrated, depressed, sick, angry, stressed (or all of the above).  I've always said I wanted to keep this blog positive, and when I didn't know how to write about all that without bringing you down too, I just ... didn't.  So I guess I shouldn't have been surprised when I got an email from a friend who was worried when I hadn't written in so long.  But this time it's different.

Sunday, February 19, 2012

Who Are We?

I've recently discovered that either I have Multiple Personality Disorder or I was crowned Queen when I wasn't paying attention.  Those are the only logical explanations for one person to refer to herself in the plural form, and it seems I do that quite often.  I noticed it the other day, and then caught it several more times after I started paying attention.  Apparently, I am no longer just me.
I went to see a new doctor the other day, and she asked me about a few of my symptoms.  "We've been dealing with this since October," I told her.  "We tried {blah blah blah} treatment, and then we had {blah blah blah} side effects.  As the doctor and I discussed my medical history, I told her all about what we went through a few years ago, when we saw so many doctors and got nowhere, so we just gave up.

Now, if I recall correctly, I was the only one with symptoms.  I was the one who was tested.  I was the one who took medication.  I was the one with side effects.  And though everyone else encouraged me to keep trying new doctors, I was the one who gave up on them.  Going through it all over again now, these symptoms & side effects are showing up in/on my body, not in a group.

That isn't the only situation in which I've caught myself doing this, either.  Someone asks if I have plans, and I answer with what we are doing (or that we're not doing anything).  At work, I respond to most offers by saying how glad we are to have our volunteers' support, or to let people know what we are looking for in a given situation.

Saturday, February 11, 2012

Judge Not ...


Sorry ... I didn't mean to yell.  

Actually I did ... just not at you.  I know you would never judge me (after all, you could just stop reading if you didn't like me).  You are kind, caring ... you look to see the best in people ... you see the best in me.  I have no reason to yell at you.

No, I'm trying to send this message to myself (though I notice I used the word trying, so who knows whether it'll actually work).  I make excuses to myself, and I make excuses for myself, but I don't believe either one, and I can't stop judging me.  

I have gained 40 pounds in the past 10 months.  And I'm absolutely disgusted by that fact.

Now I admit that some of the weight came on from a bit of stress eating (it hasn't exactly been a great 10 months), but the reality is that most of it is not my fault.  For the most part, I eat healthy food.  For the most part, I eat reasonable portions.  I do not deserve this weight ... or this disgust.

Saturday, January 21, 2012

New Year, New List

Oops!  In my last post, I mentioned that this year has been off to a really rough start.  I wanted to vent, to scream, to complain ... but decided to take a healthier approach.  After taking a few deep breaths, I decided to delete the list of problems I'd typed up, deliberately choosing not to give those issues any more attention than they already demand.  I said that there were actually some high points in the past couple of weeks, too, and that I'd much rather focus on them.  And then I ended the post.

So what I realized is that while I did take a moment in my head to think about the good things, I didn't really take much time to focus on them.  I didn't even tell you what they were!  How can I expect that positive energy to circulate and grow if I don't actually take the time to recognize and appreciate the things that bring me joy?  It's nice to take a moment to smile quietly to yourself, but it's so much more meaningful - and rewarding - to actually put it out there.  Let the people who made you smile know it ... and it'll make them smile, too!

With that ... it's time for a new list of things that have made me happy since the start of the year.

Friday, January 13, 2012

At Least There's That

Two Thousand and Twelve has been an absolutely ridiculous year for me so far (I can't believe it hasn't even been 2 weeks yet!).  And I don't mean ridiculous as in silly and fun ... I mean ridiculous as in there have been SO many things going on & going wrong, that I just have to laugh ... to keep myself from putting my head through a wall (or so I don't cry, scream, or hurt someone)!

I was originally going to write a post entitled Really, 2012?!?.  It was going to be a list of all the things that have gone wrong so far, with some snide remarks to follow each one ... and for just a week and a half, it would've been a pretty long list.  I just needed to vent.  But while venting may sometimes be necessary, it wasn't the way I wanted to work through this ... well, not entirely, anyway.  Me being me, I'd have to put a positive spin on things, like I did over the 2010 holidays and again a few months later.  

And then I remembered a quote that I saw in my facebook news feed the other day (I subscribe to a bunch of positive energy type pages, so I get bombarded with daily affirmations of the good in life, things to be happy about, etc.).
So ... um ... yeah ... there is that.  I didn't die.  And I am thankful for that.

You see, that actually could have happened.  A lot of things did happen, but a lot of worse things could have and didn't. So at least there's that.

With that in mind, I'm not going to tell you all the things that went wrong for me over the past 12 days, even to turn them around and find the silver lining.  I don't need to give the clouds any more attention than they demand on their own.  Besides, when I think about it, there were quite a few really great things in the past week and a half, too ... and those things (and people) are much more worthy of my attention.  So while it's always easier to vent about all the things that have gone wrong, I'd rather focus on the things that have gone right.  If we take a moment to really think about it, I'm sure we can find a lot more of those positive things than we realize ... so let us all be thankful for that.

**If you like what you read, tell a friend.  Actually, tell me too - post a comment below!  If you don't like it ... well ... I'm all for honesty, but please be gentle!