Oh boy...

I'm in an extraordinarily bad mood today. I was doing an excellent job of fighting off all of the sickness that I've been exposed to and now I'm sitting here on my couch with an earache,a sore throat and a very runny nose. I would complain about the body aches, too, but I can't tell if they are illness related or lupus related. I really tried so hard to avoid getting sick and I'm angry now because I feel like it was for nothing. The end result is the same. All I did was postpone it.

I think that the possible sickness is just the tip of the anger iceberg. I can't stand having lupus. It's not the pain that gets me the most. It's not even because it's incurable. I can deal with those things. What I'm struggling with is the parts of my life that have been changed. I don't know how to grieve for all that I've lost because of lupus, so instead I just try to not think about that aspect of my illness that much.

Unfortunately, that's the problem. I think that because I'm trying not to let my feelings show, it's easier for anyone who interacts with me to just pretend that I'm not sick. I'm not sure how many people do it because they don't take lupus seriously, or how many people do it because it's just not something that they feel affects them. I know that there are people who avoid talking about it because it's an uncomfortable subject and I know that there are people who are sad about my diagnosis. I can look past what other people think as long as it doesn't affect me. Today, however, I am very much affected by pretty much anything.

I get that life doesn't stop happening just because I have lupus and I don't expect it to. I'm just having a hard time dealing with the assumption that if I have a good day, then that means that I shouldn't be having too many more bad days. I resent that! If I have a good day, it's never because I was pain-free. I haven't had a day since my flare started where I wasn't in pain. Just because I don't complain all of the time doesn't mean that the pain is gone. I know that people grow tired of listening to me complain and I've grown tired of complaining about how much pain I'm in.

I still work full time and when I can, I like to volunteer for the Red Cross. I know that it may seem like if it's too hard, I shouldn't do any of it. It's simple, really. I am mor than capable of doing things like work and housework, but it doesn't mean that I'm not in a butt-load of pain. I've just learned to adapt to my disease. I'm not extraordinary in the least, I just have the ability to function and be sick at the same time.

I realize that this turned into more of a rant than I wanted it to be, but I needed to get it all out of my system.

Lupus sucks!

Making the choice.

It's becoming very clear to me that I need to redefine my definition of what constitutes a "Good Day". I can't wait around for the pain to be gone before I can allow myself to be happy. Lupus has given me levels of pain that I have never experienced before. Lupus is relentless and brutal. I believe that once I get past this flare, I'll have a better understanding of it but I won't delude myself into thinking that it won't be so bad the next time. The reality is that it is very likely that any future flares will be pretty bad. This one has definitely owned me so far. That's why I need to change my expectations so that I can put my focus on all of the parts of my life that ARE good instead of letting the physical pain consume me. It will take me apart if I give it my permission to have that kind of control.

The kind of pain that I'm in doesn't become less intense with the passage of time. It doesn't operate according to any particular set of guidelines. Lupus is a very personal experience for every person suffering from it because of all of the complications that tend to come up. For that reason, lupus is incredibly difficult to diagnose. In fact, there are people with lupus who spend years seeing doctors from so many different specialties only to be given a vague diagnosis. Worse yet, there are those who are told that the pain that they are living with is all in his/her head and most likely related to depression. I am lucky in this respect. My blood test results supported a lupus diagnosis and the positive ANA results couldn't be argued. Even so, from a pain perspective, it makes no difference because my treatment options would still be slim. A person who lives with an incurable chronic illness does so knowing that the pain could subside but it can resurface and be as excruciating as it was before. There is no comfort in hoping for the pain to just go away or in hoping that you can get used to how much you are hurting. I can't live that way.

So here is my plan. I plan on trying to find happy moments in my days. I can't have pain be the ruler by which my happiness is measured. I know that I'll still have days that are just lousy, but my odds of having good days will be increased. It's definitely worth a shot if

Rain,rain...

GO AWAY! Seriously, rain...

As much as I enjoy a good rain, my body doesn't respond well to it. Today has been on the rougher side because of the havoc that the rain is causing to my joints.

Rain will keep falling. The only difference is that I won't enjoy it the way that I used to. Rain used to be a comfort to me. I'm hopeful that I'll be able to get that feeling back again some day.

What goes up...

Must come down.

Yesterday was a fantastic day and I did all that I could to bask in the warm, fuzzy feelings that came with my good day. Yesterday made me feel like I could handle anything that lupus could throw at me. I had hope.

Today is completely reversed and while I still have hope, it's dangling by a thread. It's gorgeous outside, but all I can do is observe it through my living room window. My body hurts all over. A person might think that with pain this intense, that it would be easier to locate it's origin, but that's not the case. The only thing that I am certain about is that I can't get away from it. I can't escape it and I can't ignore it. Small tasks turn into monumental tasks, and large tasks are impossible. Frustration, anger, sadness and a sense of loss are my companions for today.

I'm thankful that hope is my constant companion. Hope is what what carries me from one day to the next. Hope allows me to pick up the pieces when I feel so fractured. Hope is sometimes all that I have. I'm thankful that hope is enough.

Eyes to see

It was a gorgeous day and I was so happy to be able to enjoy it! It wasn't too long ago when I wouldn't have taken notice of any of the little details. Today was the day that I finally had the eyes to see. While nothing has changed, everything feels new to me.

I hope that each day will feel this way. I'm pretty sure that in order for that to happen, I will have to keep my eyes open. Otherwise, I may find that each day will feel like the day before and each day will bleed into the next one. It's a cycle that I don't want to be trapped in. Sadly, it requires less effort to go through the motions because it's a pattern that I've beam accustomed to. It'll take more effort. There will be times when seeing the beauty in each moment will be out of my reach. I'll just have to keep looking.

Pac Panic

It's been an interesting day.  I think that this is the kind of day that happens when there is a lesson to learn.  It would seem that when all kinds of situations just fall into your lap without warning, then that means that there is something to learn whether you want to or not.  I think that there are coincidences and then there are odd occurences that just seem to strike at a time when you are trying your very hardest to ignore that the lesson does need to be acknowledged at the very least.  The goal is to learn the lesson and move on, but sometimes if we persistent and dedicated to procrastinating, we can get a little more time to find another way to not deal with the opportunity to learn.  Yeah, it would definitely be easier to just move forward, but I have gotten pretty decent at finding little nooks and crannies to hide in so that I can dodge my lessons and hopefully get some time to do one of two things:  Regroup and tackle it head on or find a better place to hide and hope that I don't stink at Hide & Seek.  Sometimes I'm just completely at a loss for a resolution to a problem or the ability to know what the right thing to say would be.  I usually find a way to figure it all out, but not before I make sure that I have enough time to become a total recluse for a bit.  It's usually then that I can figure out what's next. 

I don't do well under pressure.  In fact, I have made some incredibly dumb decisions because I find myself under pressure and then I react because at that moment in time, making a choice no matter what it is, will be a relief.  It's like playing Pac-Man and all of a sudden realizing that Pac-Man has dots all over the place and there are ghosts on his tail.  It seems dire and then a panic sets in and then before you know it, you stop doing anything at all and then you are ghost food!  If Pac-Man were real life and I were Pac-Man, then that could create some major problems.  I'd like to learn to adapt to pressure and not letting pressure drive my actions. 

I'm pretty grateful for answering machines and caller ID because those buy time for me.  I know that at some point, I will have to wear my "big girl pants" and handle unsavory situations like a responsible adult.  I know that I can, but I also worry depending on the circumstances.  Ideally, everyone talks it out, like adults are supposed to do, but how often does a situation actually work out that way.  It's been my experience that some confrontations end up being the kind that belong on Jerry Springer, and I don't even need to be involved!  I sometimes wonder how the Hell it happened considering that I didn't talk to anyone about anything.  It doesn't even need to have anything to do with me at all!  I take the "No Drama" stance and I like it for me. 

Maybe the lesson is that I don't have all the answers and even if I did have advice, is it feasible that the advice that I can offer would be listened to.  Sometimes I'm not the right person to ask and often times, I've been on the recieving end of a tirade that doesn't involve me and I don't know all of the people involved.  How could I possibly be helpful with something like that?  I am also pretty sure that relationships are give and take and considering that the people in my life that are putting me in an awkward position do not know me at all.  I know that I wouldn't feel comfortable with asking for and taking advice from a person that I really knew anything about.  I mean, really.  What if I was completely insane but just hid it well? 

I'll be braver soon.  I know I will, but for the time being, I think that hiding out is the best solution.  Anytime that I try to tackle an issue without hiding first, I am driven by emotions only and how I handle it is only serving me.  I'll just feel bad afterward and since I don't like that feeling, I wait.  I also bounce a lot of situations off of Steve.  He's great for helping me to be logical when it's needed and to be aggressive if that's called for. 

I think that I also need that space to consider long term ramifications and weighing out the benefits versus the detriments.  My only hard and fast rule is that it's never a good idea to engage crazy!  Everything has a way of working out in one way or another.  Sometimes it's that time frame that can clear up my mind so that I can make a decision based on what is really the way that I want to handle things instead of lettng Pac Panic set in.

I used to consider myself a coward, but now I can see that I need the time to step outside of myself and see the situations for what they truly are.  That's the way that it will have to be for me.  At least for now/

My Steve, My Muse, My Hero

How can I have words to relate how much my husband, Steve, has meant for me?  I don't know that those words exist for me.  Steve displayed strength for me when I just couldn't have it for myself.  He let me be sad about my diagnosis and has never made me feel like I couldn't grieve for what I have had to lose because of the lupus.  I have felt as though I had nothing left to offer to this man, and I couldn't promise that I would ever be exactly as I was.  Steve hasn't run away from me and he has allowed me to be scared without worrying about his feelings.  He has laid down the law and told me to stop doing anything so that I could rest, which is important for me.  I'm glad that there have also been times when I could be strong for him and that makes me feel happy and the helpless feelings that could drown me, disappear because I know that I can help him too.  I feel like it's been a team effort and if not for that team effort, I think that my fear might be too much for me,  He's saved me and I will never be able to return that favor.  I love him unconditionally and I think that I get that same love back.   He's beautiful and brilliant and he is kind and selfless.  I couldn't ask for a better partner,  He's a person full of integrity and love for the people in his lives.  This world is a better place for him being in it.  I'me in awe of him.  I always will be!