Sometimes it takes all of the effort that I have in me to make it through a painful day without constantly complaining about how lousy I feel. I know that it won't make me feel any better if I do and it is probably pretty annoying to be on the receiving end of. Sometimes I have to put how I feel on the back burner so that I can take care of my responsibilities. This is my idea of wearing my "Big Girl" pants.
Today was a "Big Girl" pants kind of day. I don't do well with rainy weather and today was a rainy day. My body hurts in ways that I never imagined it could. Today was a day when all that I wanted to do was to whine and call my dad and cry. I held it together and fought the urge to curl up into the fetal position and sob.
I'm really lucky that I have an amazing husband who doesn't mind letting me cry and complain when I need to be heard. He actually encourages me to tell him what I'm feeling even if it's just going to be complaining about how much pain I'm dealing with. If I didn't have the kind of support that Steve gives me, I would not be able to get through the days like this when wearing my "Big Girl" pants isn't optional.
Best. Husband. Ever!
Tuesday, April 19, 2011
Wednesday, April 13, 2011
Beautiful
I am sitting on my couch after a long day of work and I just got to thinking about how absolutely beautiful my daughter is. Olivia isn't just a pretty face; she is just so much more than that. I've watched her go from a cranky little bundle of fussiness to toddler who be explained best as an unstoppable force of nature. She's been so many different children in her lifetime, but one constant remains. She is beautiful, inside and out. I've seen that inner beauty shine through when she stands up for herself and for other people that may not feel like they can. I love how she thinks for herself. I think it's awesome that she doesn't rely on the opinions of anyone, including me and Steve, to paint a portrait of who she is. She is an absolutely beautiful person and I'm thankful for her and insanely proud of her.
There have been times when I have been ready to sell her little butt to the highest bidder (not literally!. I haven't met a parent with a perfect kid yet so it's pretty safe to say that perfect children are mythical creatures. Olivia has flaws, just like every other person who is now alive or who has ever lived, but that's not the point. I don't want her to be anything other than who she is. I believe that perfection stunts a person's growth anyway, so perfection isn't all that great. Olivia uses the mistakes that she makes to learn from them. I know a lot of adults who aren't even capable of that after a lifetime of making the same mistakes. She stands by her opinions and doesn't change them based on what other people think and I think that is pretty incredible. She has always been like that and it took me a long time to really see how big that really is! She has her own beliefs, but she's always willing to learn more. It's a huge sign of maturity. Hell, I think that she is further ahead than I am as far as that's concerned! I'm proud of who she is.
She has a track meet today and I wish I was there right now. I don't care about how well she does or doesn't do. I just love seeing her do things that she enjoys doing! She simply shines.
Olivia is beautiful!
There have been times when I have been ready to sell her little butt to the highest bidder (not literally!. I haven't met a parent with a perfect kid yet so it's pretty safe to say that perfect children are mythical creatures. Olivia has flaws, just like every other person who is now alive or who has ever lived, but that's not the point. I don't want her to be anything other than who she is. I believe that perfection stunts a person's growth anyway, so perfection isn't all that great. Olivia uses the mistakes that she makes to learn from them. I know a lot of adults who aren't even capable of that after a lifetime of making the same mistakes. She stands by her opinions and doesn't change them based on what other people think and I think that is pretty incredible. She has always been like that and it took me a long time to really see how big that really is! She has her own beliefs, but she's always willing to learn more. It's a huge sign of maturity. Hell, I think that she is further ahead than I am as far as that's concerned! I'm proud of who she is.
She has a track meet today and I wish I was there right now. I don't care about how well she does or doesn't do. I just love seeing her do things that she enjoys doing! She simply shines.
Olivia is beautiful!
Wednesday, March 30, 2011
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!
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!
Wednesday, March 23, 2011
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
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
Tuesday, March 22, 2011
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.
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.
Friday, March 18, 2011
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.
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.
Thursday, March 17, 2011
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.
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.
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