I'm afraid a lot of the time. I stay busy because I don't want to give my brain the freedom to cripple me. My mom died young and if I didn't acknowledge that fear, I would be either blind or stupid. Time is not guaranteed so it means more than I ever realized. I can't change the world, but I can plant seeds of change with the children that are in my care.
My husband and daughter are just as deep in my sinkhole that is my health, but they are the ones who offer me the rope and pull me to safety. I have nothing to give them but love. I can't promise time, but I damn sure can promise love.
I'll blog more. It"ll become more natural to share what is happening in my head, but it will take time. It hurts, but it's a good hurt
Wednesday, November 2, 2011
Tuesday, October 4, 2011
The Maestro says it's Mozart, but it sounds like bubble gum...
when your waiting for the miracle, for the miracle to come.
Waiting. More waiting. Wait some more.
Waiting for the other shoe to drop. Waiting for the big old anvil to drop from above. Maybe not an anvil, but instead a baby grand piano.
I'm anxious. I don't know why it's bothering me so much right now because at the moment I'm not waiting for anything specifically. My hematologist appointment is still over a month away. I wish that I could peg down the thought that has me feeling like this, but it eludes me.
I like to feel like I'm in control of my thoughts since I'm definitely not running the show as far as my body is concerned. As long as I have serenity in my head, then I can deal with chaos from the neck down. Anxiety over the unknown is not good for my sense of inner peace. It's like trying to come up with a battle strategy without knowing what the enemy looks like, what direction then attack will come from, the number of foes I'll be up against all while not having anything but a stick, a couple acorns and a pine cone to defend myself!
Like Leonard Cohen, I'm still waiting for the miracle to come...
Waiting. More waiting. Wait some more.
Waiting for the other shoe to drop. Waiting for the big old anvil to drop from above. Maybe not an anvil, but instead a baby grand piano.
I'm anxious. I don't know why it's bothering me so much right now because at the moment I'm not waiting for anything specifically. My hematologist appointment is still over a month away. I wish that I could peg down the thought that has me feeling like this, but it eludes me.
I like to feel like I'm in control of my thoughts since I'm definitely not running the show as far as my body is concerned. As long as I have serenity in my head, then I can deal with chaos from the neck down. Anxiety over the unknown is not good for my sense of inner peace. It's like trying to come up with a battle strategy without knowing what the enemy looks like, what direction then attack will come from, the number of foes I'll be up against all while not having anything but a stick, a couple acorns and a pine cone to defend myself!
Like Leonard Cohen, I'm still waiting for the miracle to come...
Sunday, September 11, 2011
Even when we don't see it...
It's in all of us. Strength. Not physical strength, but the brand of strength that allows us to endure the kind of pain that none of us ever believes that we could withstand. It's what makes it possible for us to scratch and claw and climb after we have fallen so far down. It's not just strength, but courage as well. How else is it possible to lose those that we love with everything that we have inside of us but still have the capacity to love? That's strength and courage to me. When we can open our hearts and love so completely knowing how badly it hurts to lose our loved ones speaks volumes about how strong we are!
My sister lost her son two years ago today. Although Anthony only had one short day in this world, he left little fingerprints on our hearts. Tyra wasn't just strong enough to endure losing Anthony; she stayed strong enough to be willing to give love again. She now has a beautiful baby boy, Jaden, who is most definitely loved by all!
When our mother died, it was a struggle to be strong. I shut out my feelings as best I could because at the time, I believed that strength was not showing anyone how much I was hurting. I did my best to disconnect emotionally. I wouldn't allow myself to miss my mom until I reached the point in time when I couldn't hold it all in anymore. I refused to even let myself think about losing my dad because I felt like I wouldn't be able to go through the devastation of losing another parent. As strange as it may seem, I wanted to be able to shut down my feelings. I didn't want to love my dad because I wanted to avoid the pain that would be sure to come if I lost him, too. I don't believe that any longer and I'm thankful for it. I love my dad. I'll dig deep to gather the strength that I need to allow me to love my dad without holding back because of the pain that I know will come when he's gone.
People who suffer loss and heartache and still remain open to love and be loved are amazing. It takes strength and courage to willingly to do give love, which is infinte, while still knowing that life is finite. Very strong and brave, indeed!
My sister lost her son two years ago today. Although Anthony only had one short day in this world, he left little fingerprints on our hearts. Tyra wasn't just strong enough to endure losing Anthony; she stayed strong enough to be willing to give love again. She now has a beautiful baby boy, Jaden, who is most definitely loved by all!
When our mother died, it was a struggle to be strong. I shut out my feelings as best I could because at the time, I believed that strength was not showing anyone how much I was hurting. I did my best to disconnect emotionally. I wouldn't allow myself to miss my mom until I reached the point in time when I couldn't hold it all in anymore. I refused to even let myself think about losing my dad because I felt like I wouldn't be able to go through the devastation of losing another parent. As strange as it may seem, I wanted to be able to shut down my feelings. I didn't want to love my dad because I wanted to avoid the pain that would be sure to come if I lost him, too. I don't believe that any longer and I'm thankful for it. I love my dad. I'll dig deep to gather the strength that I need to allow me to love my dad without holding back because of the pain that I know will come when he's gone.
People who suffer loss and heartache and still remain open to love and be loved are amazing. It takes strength and courage to willingly to do give love, which is infinte, while still knowing that life is finite. Very strong and brave, indeed!
Thursday, September 1, 2011
"Birth" day and beyond!
Birth is more than just a moment to cherish. It's only the key that unlocks the door. What is beyond that door is the reason that we are all born in the first place! We are born to really live! We are born to learn and to teach. We are born to give and recieve love. We come into our lives with an open canvas that lets us paint the picture or the empty journal that lets us tell our story. We are born to experience life, not just get through life. Life shouldn't be something that we feel that we have to "get through". I'm not interested in getting through life without drinking it all in. I'm not talking about just the parts where I am full of bliss. For me, I think that if I only want the joyful times, then I'm not honoring the contract that I made with God when I was given life. It's not always going to be pretty. In fact, it's ugly and painful at times. There are times that we truly feel like we can't possibly handle any more pain that we've been living in, but it's that pain that lets us know that we are really alive and that we are learning. The lessons hurt like Hell but they do mean that we have a pretty strong desire to live if we are willing to go through the pain with only hope to cling to for a better tommorow. I need every single experience in my life, the good and the bad,. I need all of the past experiences no matter what they were and I look forward to having more experiences to make my life fuller. I know that I don't get a guarantee that I'll have smooth skies and beautiful weather to cancel out the gut wrenching pain that has become my constant companion. It's all a part of the experience of really living.
I find birth to be a bitter sweet time because we don't have a finite amount of time on this earth to discover our passions and to dive into them and explore. There are no guarantees. It's why it's crucial to take time to immerse ourselves into life! We need to fall in love, and like most people, experience heart break as well. It's all part of the package. If we are lucky enough to have opportunities to experience something new, then we shouldn't let it pass us by. Sometimes those opportunities help us to rediscover our passions and even pursue them! If we are simply going through the motions in life, we will always miss out on those chances! That's something that comes back to haunt us. We need to really live! If we don't, then our story will end with no resolution and our painting will be incomplete.
Fall in love with living! Expect that sometimes you won't want to, but love life anyway. Yes, there will most certainly be pain and loss. Yes, there will be anger and resentment as well as many other feeling that pretty much suck. There's no denying that. I like to think about the other aspects of living that make the bad feeling worth having. We will experience love in so many forms and the best part of that is that when we give that love without conditions, we will get it back even if we don't expect to! We can learn, and that's a beautiful thing. We can teach, and that's beautiful, too. We can show compassion. We can take joy in what we have a passion for doing. I love to listen to Olivia play guitar because she lights up when she plays and I love to see that! She's completely in her element when she's playing. She's creative and talented, but the absolute joy that she has when she plays is what is most clear.
I read a quote today and it really resonated with me.
"Each moment is a place we've never been." -- Mark Strand
I find birth to be a bitter sweet time because we don't have a finite amount of time on this earth to discover our passions and to dive into them and explore. There are no guarantees. It's why it's crucial to take time to immerse ourselves into life! We need to fall in love, and like most people, experience heart break as well. It's all part of the package. If we are lucky enough to have opportunities to experience something new, then we shouldn't let it pass us by. Sometimes those opportunities help us to rediscover our passions and even pursue them! If we are simply going through the motions in life, we will always miss out on those chances! That's something that comes back to haunt us. We need to really live! If we don't, then our story will end with no resolution and our painting will be incomplete.
Fall in love with living! Expect that sometimes you won't want to, but love life anyway. Yes, there will most certainly be pain and loss. Yes, there will be anger and resentment as well as many other feeling that pretty much suck. There's no denying that. I like to think about the other aspects of living that make the bad feeling worth having. We will experience love in so many forms and the best part of that is that when we give that love without conditions, we will get it back even if we don't expect to! We can learn, and that's a beautiful thing. We can teach, and that's beautiful, too. We can show compassion. We can take joy in what we have a passion for doing. I love to listen to Olivia play guitar because she lights up when she plays and I love to see that! She's completely in her element when she's playing. She's creative and talented, but the absolute joy that she has when she plays is what is most clear.
I read a quote today and it really resonated with me.
"Each moment is a place we've never been." -- Mark Strand
Tuesday, August 9, 2011
Some good news!
I got all of my results back from my blood work and bone marrow aspiration yesterday. I already had a diagnosis of myelofibrosis but I didn't know if it was primary or secondary and until I knew, I didn't want to panic. It's secondary which is a great thing! I will be having blood work done on a regular basis and follow the course of treatment that I decide on. I'm not ever going to have an easy path but I'm so thankful to have a path to follow!
If I had been diagnosed with primary myelofibrosis, then the prognosis would have been pretty bleak. I would have been given a survival rate of between 5 to 7 years. There is no effective treatment for primary myelofibrosis in my case. Lupus complicates every health problem whether it's obvious or not. I'll always have to be vigilant because the only consistent aspect of lupus is it's inconsistency! I'm not going to hear hoof prints and think "horses" from this point on because sometimes it really is a zebra.
I'm still processing all of the information that I've been given and I haven't quite pegged down what I'm going to do for a course of treatment yet because I just didn't know what I was planning for. It's going to be complicated because I have multiple system involvement with lupus and it's not helping to still be in the same flare that I was in a year ago. Whatever I do, the biggest piece of getting healthier will be keeping opportunistic illnesses in check and keep up with regular blood testing.
While the news is awesome and I am thankful for it, I know how easily it could have gone the other direction. I know that I'm at risk for blood related cancers and today's negative isn't a guarantee for the results that I'll get the next time around. I'm just incredibly thankful for now.
If I had been diagnosed with primary myelofibrosis, then the prognosis would have been pretty bleak. I would have been given a survival rate of between 5 to 7 years. There is no effective treatment for primary myelofibrosis in my case. Lupus complicates every health problem whether it's obvious or not. I'll always have to be vigilant because the only consistent aspect of lupus is it's inconsistency! I'm not going to hear hoof prints and think "horses" from this point on because sometimes it really is a zebra.
I'm still processing all of the information that I've been given and I haven't quite pegged down what I'm going to do for a course of treatment yet because I just didn't know what I was planning for. It's going to be complicated because I have multiple system involvement with lupus and it's not helping to still be in the same flare that I was in a year ago. Whatever I do, the biggest piece of getting healthier will be keeping opportunistic illnesses in check and keep up with regular blood testing.
While the news is awesome and I am thankful for it, I know how easily it could have gone the other direction. I know that I'm at risk for blood related cancers and today's negative isn't a guarantee for the results that I'll get the next time around. I'm just incredibly thankful for now.
Wednesday, August 3, 2011
Counting blessings
So, I decided to conduct an experiment with regard to miracles. My plan was initially to keep track of every miraculous moment from the moment that I woke up until 8:00pm. I didn't assign values to the miracles because I didn't want to spend all of my time waiting for the "real" miracle to happen. If I had been fixated on big miracles, then I would have missed out on some of the moments that often pass by without any acknowledgement.
It's funny how important keeping track of miracles become when it feels like those moments are few and far between. My concept of what I consider miraculous has changed so much that it bares only a small resemblance to what it was. I'm working on being able to let go of the ideal miracle. I'm taking baby steps in the right direction, so It's progress. Slow and painful progress but it's forward movement. This has been a challenge for me because there will always be a piece of me that believes that nothing is impossible. There will always be place in my heart that is home to a little kid who not only believe that everything is possible even if the science doesn't support her beliefs. Who knows? Maybe one day I'll achieve my career goal and become a fire truck. Note that my childhood dream job isn't to be a fire fighter...I had loftier goals. I wanted to be the fire truck instead. Now I'm not rocket scientist, but I'm fairly certain that the technology to turn a little girl into a fire truck hasn't been perfected...yet! I believe that a large part of the jump from impossible to absolutely possible is an open mind. Everything that exists now used to be impossible. That idea is a huge source of comfort when I hit a bump with my recovery. It's really more like hitting a huge pothole that I didn't notice until after the damage is done. I cling to my childhood concept of believing that I could do anything when I hit those potholes and feel hopeless. Believing big, for me, has been the difference between swimming in rough water with everything I have in me even when it hurts the most and being dragged under without even a moment of resistance. In either case, the setting remains the same. The water would be equally intimidating and dark. The terror of the unknown would still exist. If I take a chance and fight because I have a belief that anything can be done and drown, then I'm no worse off than if I had given up hope as soon as I realized that I was in trouble.
It's a struggle to redefine my definition of a miracle. It truly sucks. I've had to redefine "normal" and that continues to be a struggle. I agonize over it. I grapple with it. I resent it. I don't want to have that experience with miracles. It's not that I'm not open to mind blowing, awe inspiring miracles. It just means that I'm open to every moment that I could consider miraculous even if the rest of the world doesn't see what I see. I don't remember the last time that I had more than a few days that weren't filled with pain. I consider myself lucky now if I have a couple days in a row that aren't brutal. I think that being conscious of as many of the moments that I see as miraculous as I can will help me. I keep butting my head against a wall that has no intention of moving out of my way. It's exhausting. The exhaustion breeds fear and apathy and it's so hard to pick myself up again. Every time I have to pick myself up again leaves a scar. It's not a matter of logic. I understand my diagnosis. It's when I feel like I've turned the corner and I'm on my way to feeling better and being stronger and then I somehow end up being back where I started, except that I lost twenty minutes because I don't know where in the Hell I am. It's really hard to put on my "Big Girl Panties" when I would rather go hide in a corner and lick my wounds.
Being aware of my miracle moments today were instrumental in neutralizing some of the crippling fear today. I just needed to be open to receiving them. Olivia's first day of driving in her driver's ed. class was amazing and she was proud and that made me feel proud, too. Steve's toe surgeries are healing up nicely and that's a great thing! Cristi came over this morning at just the moment when I felt like I was going to burst into tears because of my body's decision to wage war with me first thing in the morning. That was a divine moment. Olivia's bedroom was clean and I didn't even have to ask. Brent gave me movie passes and Tammie gave me two cans of Mountain Dew. The weather was beautiful! Even though it was really hot out, the breeze was nice and it wasn't nearly as humid. Karen gave me some ridiculously cute Muppets socks and I wore a pair of them today. It made me smile every time I looked at my "Animal" socks! I took some time for myself even though I had tasks on my list of stuff to get done. I needed this day. I needed to believe like I did as a little girl. Whole-heartedly. I think that having that ability to believe that everything is possible is a miracle in itself!
It's funny how important keeping track of miracles become when it feels like those moments are few and far between. My concept of what I consider miraculous has changed so much that it bares only a small resemblance to what it was. I'm working on being able to let go of the ideal miracle. I'm taking baby steps in the right direction, so It's progress. Slow and painful progress but it's forward movement. This has been a challenge for me because there will always be a piece of me that believes that nothing is impossible. There will always be place in my heart that is home to a little kid who not only believe that everything is possible even if the science doesn't support her beliefs. Who knows? Maybe one day I'll achieve my career goal and become a fire truck. Note that my childhood dream job isn't to be a fire fighter...I had loftier goals. I wanted to be the fire truck instead. Now I'm not rocket scientist, but I'm fairly certain that the technology to turn a little girl into a fire truck hasn't been perfected...yet! I believe that a large part of the jump from impossible to absolutely possible is an open mind. Everything that exists now used to be impossible. That idea is a huge source of comfort when I hit a bump with my recovery. It's really more like hitting a huge pothole that I didn't notice until after the damage is done. I cling to my childhood concept of believing that I could do anything when I hit those potholes and feel hopeless. Believing big, for me, has been the difference between swimming in rough water with everything I have in me even when it hurts the most and being dragged under without even a moment of resistance. In either case, the setting remains the same. The water would be equally intimidating and dark. The terror of the unknown would still exist. If I take a chance and fight because I have a belief that anything can be done and drown, then I'm no worse off than if I had given up hope as soon as I realized that I was in trouble.
It's a struggle to redefine my definition of a miracle. It truly sucks. I've had to redefine "normal" and that continues to be a struggle. I agonize over it. I grapple with it. I resent it. I don't want to have that experience with miracles. It's not that I'm not open to mind blowing, awe inspiring miracles. It just means that I'm open to every moment that I could consider miraculous even if the rest of the world doesn't see what I see. I don't remember the last time that I had more than a few days that weren't filled with pain. I consider myself lucky now if I have a couple days in a row that aren't brutal. I think that being conscious of as many of the moments that I see as miraculous as I can will help me. I keep butting my head against a wall that has no intention of moving out of my way. It's exhausting. The exhaustion breeds fear and apathy and it's so hard to pick myself up again. Every time I have to pick myself up again leaves a scar. It's not a matter of logic. I understand my diagnosis. It's when I feel like I've turned the corner and I'm on my way to feeling better and being stronger and then I somehow end up being back where I started, except that I lost twenty minutes because I don't know where in the Hell I am. It's really hard to put on my "Big Girl Panties" when I would rather go hide in a corner and lick my wounds.
Being aware of my miracle moments today were instrumental in neutralizing some of the crippling fear today. I just needed to be open to receiving them. Olivia's first day of driving in her driver's ed. class was amazing and she was proud and that made me feel proud, too. Steve's toe surgeries are healing up nicely and that's a great thing! Cristi came over this morning at just the moment when I felt like I was going to burst into tears because of my body's decision to wage war with me first thing in the morning. That was a divine moment. Olivia's bedroom was clean and I didn't even have to ask. Brent gave me movie passes and Tammie gave me two cans of Mountain Dew. The weather was beautiful! Even though it was really hot out, the breeze was nice and it wasn't nearly as humid. Karen gave me some ridiculously cute Muppets socks and I wore a pair of them today. It made me smile every time I looked at my "Animal" socks! I took some time for myself even though I had tasks on my list of stuff to get done. I needed this day. I needed to believe like I did as a little girl. Whole-heartedly. I think that having that ability to believe that everything is possible is a miracle in itself!
Monday, July 25, 2011
Steve and Olivia
I miss my beautiful family. Steve and Olivia give me so much to look forward to! I never imagined that I could love anyone as much as I love Steve and Olivia. I didn't know that a heart could love so much. I am so thankful that they feel the same about me. How else could I explain the fact that they take such good care of me and even though I'm pretty damaged goods, they still think that I'm perfect...for them. What more could I ever need?
I know that I'm not always a barrel of laughs and Steve and Olivia are great about being patient with me when I feel so down. They don't make me feel as if I'm a burden to them because of the pain that I am often in. I'll never be able to thank Steve and Olivia for the love that they give to me.
I hope that one day I'll be able to give to my family what they have given to me.
They have given me hope.
I know that I'm not always a barrel of laughs and Steve and Olivia are great about being patient with me when I feel so down. They don't make me feel as if I'm a burden to them because of the pain that I am often in. I'll never be able to thank Steve and Olivia for the love that they give to me.
I hope that one day I'll be able to give to my family what they have given to me.
They have given me hope.
Tuesday, July 5, 2011
Motivation
Isn't the first day back to work after a long weekend brutal? I could barely get myself up and moving and it took me a good four hours to get myself together enough to actually follow my daily lesson plan. I've been excited about this week's plan! I'm calling it "Weird-o Science Week" and it promises to be lots of fun and also a lot of opportunities to learn and to get our hands dirty. We will be creating a home-made volcano, experimenting with a 2-liter of Diet Coke and a pack of Mento's, creating our own slime that goes from liquid to solid to liquid again and many other experiments. This has been my first week in a long time that I have taken joy in being able to enjoy this with my daycare kids. They rock!
I believe that the key is two-fold. First, the weather is getting to be beautiful and second, I know that in less than 2 weeks, Steve and I are going to Mexico on our vacation. It is a beautiful thing to have something to look forward to. I am also getting inspired with my job. I am coming up with wonderful, educational and fun lesson plans and they all just seem to fall in place. I love that we still have "Daycare Olympics" on the horizon and a new favorite of my kids, "Gameshow Week". It's all good! I'd be lying if I didn't say that my personal favorite theme is "International Foods Week". I have so many ideas in regard to different international dishes to try that I really ought to make it a point to write them all down!
Most of the time I love my job. Where else could I work in an environment that allows me to be a part of a group who aren't just loved by me, but love me in return :) Can you imagine an employer coming up to his employee and giving him a hug and a high five before they left for the day? It might be a little off-putting! That's the beauty of working with children. They never shy away from letting me know how much they love me (or how mad they are at me, depending on their moods!)
There is the flip side, however. Sometimes it takes all that I have inside of me to just get through the day. I really dislike being grumpy and when I am, I feel like I did my kids a great disservice by being so cranky. I don't get crabby with them. I internalize the crabbiness until all of the kids have left for the day. It breaks my heart when I see one of my kids wanting to play with me and I have to decline because I feel so lousy. I can't stand it when I'm not on top of the game. Thankfully, they understand that some days are rough for me and they are great at working with me to find ways to have a fun day. I look at them and see how wise they are, how they can take the good with the bad. They are pretty awesome at adapting to change. I love them for that.
I am also so damn lucky to have married a man who fully understands what my days typically are like and he gives me no grief about it. He just simply loves me, painful body and all. He lets me have my pity party for one when I need it. I love that he doesn't try to "fix" me. I feel loved just as I am and that's a good feeling to have. I have a daughter who still kind of doesn't grasp what SLE is like to have but it doesn't stop her from doing what she can to lighten my load.
Sure, I look peachy-keen on the outside, but on the inside, I'm crumbling. I do what I need to do to juggle all of the responsibilities that I have ownership of. Sometimes I drop the ball and I just get back up and give it another go.
Lupus doesn't get to take everything away from me. There are too many things that I want to do and so many places that I would love to go. I don't delude myself that once this flare ends, then I'll not have to deal with them again. They will come back but the difference will be that I'll be able see the signs of a potential flare and hopefully at least scale back the intensity. I know that there will be a time when Lupus gets the upper hand but until that happens, I'm going to do my best to delight in the simple things that I might not have noticed before. I'm going to do my best to have fun!
Having lupus is a daily struggle and I've had days when I could barely move. I don't remember the last pain free day that I've had. I really don't have any physical symptoms so I look pretty healthy. What I would love to do is to find a way to raise funds, not just for lupus reseach, but for many other illnesses that have no tell-tale signs. I would like to see research done to find ways to determine the origin of lupus.
I believe in God, who has saved my butt on more than one occasion. I believe in science and research because of all of the advances that have already been made. Though I'm not eligible for Benlysta treatment, I hold on to the hope that one day it'll be my turn :)
I'm not going to ne held a prisoner in my body I'm not going to let lupus
call of the shots. Lupus doesn't let up but neither do I!
I believe that the key is two-fold. First, the weather is getting to be beautiful and second, I know that in less than 2 weeks, Steve and I are going to Mexico on our vacation. It is a beautiful thing to have something to look forward to. I am also getting inspired with my job. I am coming up with wonderful, educational and fun lesson plans and they all just seem to fall in place. I love that we still have "Daycare Olympics" on the horizon and a new favorite of my kids, "Gameshow Week". It's all good! I'd be lying if I didn't say that my personal favorite theme is "International Foods Week". I have so many ideas in regard to different international dishes to try that I really ought to make it a point to write them all down!
Most of the time I love my job. Where else could I work in an environment that allows me to be a part of a group who aren't just loved by me, but love me in return :) Can you imagine an employer coming up to his employee and giving him a hug and a high five before they left for the day? It might be a little off-putting! That's the beauty of working with children. They never shy away from letting me know how much they love me (or how mad they are at me, depending on their moods!)
There is the flip side, however. Sometimes it takes all that I have inside of me to just get through the day. I really dislike being grumpy and when I am, I feel like I did my kids a great disservice by being so cranky. I don't get crabby with them. I internalize the crabbiness until all of the kids have left for the day. It breaks my heart when I see one of my kids wanting to play with me and I have to decline because I feel so lousy. I can't stand it when I'm not on top of the game. Thankfully, they understand that some days are rough for me and they are great at working with me to find ways to have a fun day. I look at them and see how wise they are, how they can take the good with the bad. They are pretty awesome at adapting to change. I love them for that.
I am also so damn lucky to have married a man who fully understands what my days typically are like and he gives me no grief about it. He just simply loves me, painful body and all. He lets me have my pity party for one when I need it. I love that he doesn't try to "fix" me. I feel loved just as I am and that's a good feeling to have. I have a daughter who still kind of doesn't grasp what SLE is like to have but it doesn't stop her from doing what she can to lighten my load.
Sure, I look peachy-keen on the outside, but on the inside, I'm crumbling. I do what I need to do to juggle all of the responsibilities that I have ownership of. Sometimes I drop the ball and I just get back up and give it another go.
Lupus doesn't get to take everything away from me. There are too many things that I want to do and so many places that I would love to go. I don't delude myself that once this flare ends, then I'll not have to deal with them again. They will come back but the difference will be that I'll be able see the signs of a potential flare and hopefully at least scale back the intensity. I know that there will be a time when Lupus gets the upper hand but until that happens, I'm going to do my best to delight in the simple things that I might not have noticed before. I'm going to do my best to have fun!
Having lupus is a daily struggle and I've had days when I could barely move. I don't remember the last pain free day that I've had. I really don't have any physical symptoms so I look pretty healthy. What I would love to do is to find a way to raise funds, not just for lupus reseach, but for many other illnesses that have no tell-tale signs. I would like to see research done to find ways to determine the origin of lupus.
I believe in God, who has saved my butt on more than one occasion. I believe in science and research because of all of the advances that have already been made. Though I'm not eligible for Benlysta treatment, I hold on to the hope that one day it'll be my turn :)
I'm not going to ne held a prisoner in my body I'm not going to let lupus
call of the shots. Lupus doesn't let up but neither do I!
Tuesday, June 21, 2011
We deal in shades of gray
We deal in shades of gray. Every choice that we make. Every thought that enters our awareness. Everything we believe and everything that we dismiss as being incorrect.
It's all relative. I think that our particular shade of gray depends on our vantage point on a particular situation. I could ask a dozen different people what they think about something and I wouldn't be shocked if I heard a dozen different perspectives on the same issue. It very well might be that none of the responses would be any more or less valid than the others. They would just all be a different shade.
Absolutes have a tendency to lay waste to progress. Too often people cling to "right" and "wrong" without considering the possibility that there's a lot of room in between "right" and "wrong". I'm not trying to suggest that nothing is good, bad, right or wrong. There are some issues that I feel strongly about and for me, my particular absolutes work. That is what gives humanity the variance in how deeply saturated the "black" is in some places and how barely existent the "white" is in some other places. If there was a mutual respect for the differing filters that we all see life through, then we may possibly reach a place where we can hear what one another thinks with an open mind..
It's all relative. I think that our particular shade of gray depends on our vantage point on a particular situation. I could ask a dozen different people what they think about something and I wouldn't be shocked if I heard a dozen different perspectives on the same issue. It very well might be that none of the responses would be any more or less valid than the others. They would just all be a different shade.
Absolutes have a tendency to lay waste to progress. Too often people cling to "right" and "wrong" without considering the possibility that there's a lot of room in between "right" and "wrong". I'm not trying to suggest that nothing is good, bad, right or wrong. There are some issues that I feel strongly about and for me, my particular absolutes work. That is what gives humanity the variance in how deeply saturated the "black" is in some places and how barely existent the "white" is in some other places. If there was a mutual respect for the differing filters that we all see life through, then we may possibly reach a place where we can hear what one another thinks with an open mind..
Monday, June 13, 2011
Hanging out with shadows.
This isn't going to be a pretty blog entry. It's just going to be a confession of sorts. I feel a bit like a shadow. I'm still me, but just not quite as recognizable. I feel like a watered down version of me. Today is the kind of day that serves as a reminder I'm much less "me" now than I was before l was diagnosed with SLE.
The world still has all of it's color. The beauty that I see all around me hasn't diminished. I still see so much of life through an optimistic lens and I like that. I hope that I'll always at least try to find the good in every situation. I still believe in hope. I'm the one whose faded. It feels like I straddle the line between living completely and often paying dearly for it and being a "Peeping Tom" and just watching life unfold and being present for it, but not really there.
It completely sucks because it's not how I want to be. The harder that I try to keep up and just be normal, the harder it is to ride out the bad days that come as a result of trying to just be normal. It only took two "normal" days to completely devastate me. I'm afraid of having the good days because I dread the bad days. If it were only physical pain, I could learn to deal with it. It's the emotional aspects that weigh so heavily on my shoulders. The emotional toll this all takes on me is much worse than the physical pain.
Being mindful of making sure that I don't overdo it is completely exhausting. I miss being able to just live. I hate the delicate balancing act that my life has become. I know that it's that mindfulness that is the spine of avoiding days like yesterday and today. I just resent that it's become necessary. I'm angry with myself when I don't do it and I'm angry with myself when I use caution. Are my choices really either crippling pain and a virtual inability to function or just being an observer to my own life, not feeling like I have a role in it. Am I going to end up being a stranger to my own life?
Sometimes I spend a good deal of time feeling inadequate. Sometimes I feel like I've let down every person who loves me because of what I feel reduced to. Sometimes I feel ashamed because I need help now and I'm not used to that. These feelings are not the kind that I like to share with anyone. If someone else were wearing my shoes and told me about feeling like this, I would be doing all that I could to comfort that person and I would be as supportive as is humanly possible. I wouldn't even hesitate. My shoulder would be there to lean on. I just don't do well with giving myself that same courtesy. I'm hoping that by expressing these feelings, that maybe I can learn to give myself a little bit of kindness. I would be able to give that kindness to anyone else, and if I can show compassion for other people then I can learn to have compassion for myself.
The world still has all of it's color. The beauty that I see all around me hasn't diminished. I still see so much of life through an optimistic lens and I like that. I hope that I'll always at least try to find the good in every situation. I still believe in hope. I'm the one whose faded. It feels like I straddle the line between living completely and often paying dearly for it and being a "Peeping Tom" and just watching life unfold and being present for it, but not really there.
It completely sucks because it's not how I want to be. The harder that I try to keep up and just be normal, the harder it is to ride out the bad days that come as a result of trying to just be normal. It only took two "normal" days to completely devastate me. I'm afraid of having the good days because I dread the bad days. If it were only physical pain, I could learn to deal with it. It's the emotional aspects that weigh so heavily on my shoulders. The emotional toll this all takes on me is much worse than the physical pain.
Being mindful of making sure that I don't overdo it is completely exhausting. I miss being able to just live. I hate the delicate balancing act that my life has become. I know that it's that mindfulness that is the spine of avoiding days like yesterday and today. I just resent that it's become necessary. I'm angry with myself when I don't do it and I'm angry with myself when I use caution. Are my choices really either crippling pain and a virtual inability to function or just being an observer to my own life, not feeling like I have a role in it. Am I going to end up being a stranger to my own life?
Sometimes I spend a good deal of time feeling inadequate. Sometimes I feel like I've let down every person who loves me because of what I feel reduced to. Sometimes I feel ashamed because I need help now and I'm not used to that. These feelings are not the kind that I like to share with anyone. If someone else were wearing my shoes and told me about feeling like this, I would be doing all that I could to comfort that person and I would be as supportive as is humanly possible. I wouldn't even hesitate. My shoulder would be there to lean on. I just don't do well with giving myself that same courtesy. I'm hoping that by expressing these feelings, that maybe I can learn to give myself a little bit of kindness. I would be able to give that kindness to anyone else, and if I can show compassion for other people then I can learn to have compassion for myself.
Friday, June 10, 2011
Hey! A dance that wasn't an emotional train wreck! They do exist!
This evening was my daughter, Olivia's 8th grade dance, She chose a beautiful dress and looked absolutely beautiful..This comes as no shock to me because I see Olivia through the eyes of love and pride so of course she's beautiful to me. I decided to volunteer as a chaperone for the dance and I was looking forward to it! I have to say that the planning committee really brought it because the dance was beautifully decorated and all of the kids attending spared no expense in making sure that they looked fabulous which made all of the preparation for the dance that much more meaningful. Personally, since I was a chaperone I didn't need to look awesome so I borrowed a dress from someone who is a great dresser. I mean, I have dresses, but they aren't meant for looking nice. Moo-moo dresses are ideal for comfort but not for looking presentable! The decorations were beautiful and the food displays looked mighty fancy. So fancy, in fact, that I had no idea that the cups with strawberries in them were juice cups! I noticed them but didn't know what they were for!
This isn't the real reason for this blog, however. I remember being an eighth grader once and I remember the loneliness attached to it. It's tough to feel like a nobody because you don't fit the mold of what's considered "cool". I think that this applies to any grade, not just 8th. I just remember feeling like such a loser at times because I couldn't be a carbon copy of all things cool. One of the biggest regrets that I have in my life is caring about the opinions of any of the popular crowd regardless of whether they were positive or negative. It's all well and good that I don't care now, but I can't help but think about how much happier I might have been if I hadn't been so insecure. It was only when I really stopped caring about what others thought of me that I truly was happy in school and unfortunately, that didn't happen until I was a senior.
It was amazing to witness a social situation that didn't reek of the loneliness, anxiety, rejection and isolation that I was sure existed across the board for all middle schools . Sure, there were groups that were off in their own cliques but I don't think that I saw any kids sitting alone. It seemed to me that everyone had a place that they felt that they belonged. I'm sure that there was no shortage of drama but the evening was pretty positive from my perspective.
I have to admit something that is incredibly embarrassing for me but it'll make sense shortly. I had bouts of fear over being at this dance even though I'm an adult now. I made jokes about it but in all sincerity, I feared being rejected. Ridiculous, I know. It wasn't a constant feeling but just the occasional moment of irrational fear that would strike but thankfully would pass quickly. I felt completely pathetic and weak during those moments and reverted back to the socially awkward girl that just wanted to be either liked or be invisible to "mean kids". I'm cringing on the inside right now. Sometimes self reflection sucks! I share all of this because last night I didn't see anyone experiencing being an outsider and that's incredibly comforting. It also helped that I didn't feel like a loser who nobody would talk to. Granted, I didn't make new friends or anything like that, but it was my choice to not socialize too much and that felt great. I didn't feel rejected at all because I have a silly, funny and friendly daughter who has friends who are just as silly, funny and friendly as she is. Even though I was just a mom who was there as a chaperone, they weren't "too cool" to talk to me even though I'm old :)
I also made a few observations throughout the night. I observed that 8th grade boys and girls still dance the same way as when I was their age. Of course, there are always exceptions to the rule, but in my opinion it's like stepping into a time machine and going back to any middle school dance from any place at any time. I also noticed that dances are a big deal, unlike dances from my middle school time. It was seriously more like a prom and even though I know that the flyer said formal/semi-formal/casual were all welcome, I didn't expect so many beautiful dresses! I even saw some of the boys in suits and I think I saw a tux or two! Impressive!
I was going to try to pick out my favorite dress of the evening but after giving it careful consideration, I can't decide because there were too many dresses to choose from! I will say that Cassidy's owl dress was insanely awesome and it made me think "Give a Hoot. Don't pollute" and also reinforced my opinion that owls are pretty much the best bird ever. I also liked Ari's dress because it reminded me of the renaissance festival and that got me thinking about how much fun those are! I loved Yesenia's dress because it was a pretty shade of yellow but not in any way too yellow! It was a fun break from the monotony of the sea of black & white dresses. Emily, Skylar and Michelle all looked great in their dresses and I love that they all made sure to incorporate another color into their dresses because what fun is it if there's no color? Olivia's dress was exceptional because of the design and the nicely placed cut out patterns. She looked absolutely perfect. The dress is one of a kind and so is she! I love that kid!
Maybe this dance was an anomoly, maybe not. Either way, I'm glad that I got to see it for myself. Now I can replace awkward and painful associations with the positive experience of seeing kids having fun instead of having panic attacks.
This isn't the real reason for this blog, however. I remember being an eighth grader once and I remember the loneliness attached to it. It's tough to feel like a nobody because you don't fit the mold of what's considered "cool". I think that this applies to any grade, not just 8th. I just remember feeling like such a loser at times because I couldn't be a carbon copy of all things cool. One of the biggest regrets that I have in my life is caring about the opinions of any of the popular crowd regardless of whether they were positive or negative. It's all well and good that I don't care now, but I can't help but think about how much happier I might have been if I hadn't been so insecure. It was only when I really stopped caring about what others thought of me that I truly was happy in school and unfortunately, that didn't happen until I was a senior.
It was amazing to witness a social situation that didn't reek of the loneliness, anxiety, rejection and isolation that I was sure existed across the board for all middle schools . Sure, there were groups that were off in their own cliques but I don't think that I saw any kids sitting alone. It seemed to me that everyone had a place that they felt that they belonged. I'm sure that there was no shortage of drama but the evening was pretty positive from my perspective.
I have to admit something that is incredibly embarrassing for me but it'll make sense shortly. I had bouts of fear over being at this dance even though I'm an adult now. I made jokes about it but in all sincerity, I feared being rejected. Ridiculous, I know. It wasn't a constant feeling but just the occasional moment of irrational fear that would strike but thankfully would pass quickly. I felt completely pathetic and weak during those moments and reverted back to the socially awkward girl that just wanted to be either liked or be invisible to "mean kids". I'm cringing on the inside right now. Sometimes self reflection sucks! I share all of this because last night I didn't see anyone experiencing being an outsider and that's incredibly comforting. It also helped that I didn't feel like a loser who nobody would talk to. Granted, I didn't make new friends or anything like that, but it was my choice to not socialize too much and that felt great. I didn't feel rejected at all because I have a silly, funny and friendly daughter who has friends who are just as silly, funny and friendly as she is. Even though I was just a mom who was there as a chaperone, they weren't "too cool" to talk to me even though I'm old :)
I also made a few observations throughout the night. I observed that 8th grade boys and girls still dance the same way as when I was their age. Of course, there are always exceptions to the rule, but in my opinion it's like stepping into a time machine and going back to any middle school dance from any place at any time. I also noticed that dances are a big deal, unlike dances from my middle school time. It was seriously more like a prom and even though I know that the flyer said formal/semi-formal/casual were all welcome, I didn't expect so many beautiful dresses! I even saw some of the boys in suits and I think I saw a tux or two! Impressive!
I was going to try to pick out my favorite dress of the evening but after giving it careful consideration, I can't decide because there were too many dresses to choose from! I will say that Cassidy's owl dress was insanely awesome and it made me think "Give a Hoot. Don't pollute" and also reinforced my opinion that owls are pretty much the best bird ever. I also liked Ari's dress because it reminded me of the renaissance festival and that got me thinking about how much fun those are! I loved Yesenia's dress because it was a pretty shade of yellow but not in any way too yellow! It was a fun break from the monotony of the sea of black & white dresses. Emily, Skylar and Michelle all looked great in their dresses and I love that they all made sure to incorporate another color into their dresses because what fun is it if there's no color? Olivia's dress was exceptional because of the design and the nicely placed cut out patterns. She looked absolutely perfect. The dress is one of a kind and so is she! I love that kid!
Maybe this dance was an anomoly, maybe not. Either way, I'm glad that I got to see it for myself. Now I can replace awkward and painful associations with the positive experience of seeing kids having fun instead of having panic attacks.
Tuesday, June 7, 2011
Sand box is back and I wouldn't be happier!
I think that my summer just got infinitely cooler. The sandbox is full (that is, full of sand instead of 1/2 full of sand, mixed with sticks, leaves, toys & spiderwebs!). This is a good thing! I realize that most 35 year old women don't regularly play in the sand, but I'm not most 35 year old women. I have a great landscaping guy who brought over a truck load of sand for the box. I'm already planning out what I'll be building tommorrow in my head. I was thinking of just easing my way in, but I think that I'm going to build something extravagant instead! I have really missed the sandbox almost as much as my daycare kids have. It seems like a very simple thing, and it probably is, but since we all view everything that we experience with a different filter, a sandbox to me is a pretty big deal. A sandbox is possibilities and a sandbox is complete creativity. There are no mistakes when building in the sandbox. Anything that is done, can be undone, and that is a very awesome concept to me. A sandbox can bring people together (OK, in my situation, it brings children together). It is an opportunity for developing a team effort attitude and some really nice examples of sharing at it's best. It can be a vehicle for bringing kids together because how many kids will pass up the opportunity to play in the sand? Sadly, there are times when the sandbox can bring out aggression because of "turf wars". It's strange how there is an entire sandbox available but every single kid manages to find a way to be in the same corner and then everyone becomes mighty territorial. Still, it's a great time in the sandbox. It's never boring for the kids and it's even a good time for adults who allow themselves to give in to the mesmerising thrall of the sandbox. I know that I can't say no!
Since having some yardwork done, I've noticed quite a few butterflies hanging around. It probably doesn't hurt that I got 2 of those colorful globe decorations and pedestals to put them on. I would have dismissed them in the past, but now I can see how delicate they are and their gracefullness. I am still the kind of person who is enchanted with creatures like butterflies, dragonflies and damselflies. I have had a couple experiences with butterflies gathering around me and landing on me. I like to think it's because I'm totally awesome, but the logical reason might be that I was standing near colorful clothes. Still, I like my explanation more.
Now, the squirrels, they are in a category of coolness that is theirs own. Those squirrels are not afraid to work for their food! I think it's a fair trade off because how many people have seen a squirell wrestling match! I have a new squirell and he just started coming to my house yesterday. That squirrel is 100% ninja and that's why we named him Ninja Squirrel". All of our squirrels have names and we try to make note of anything that we can use to tell them apart. Who knew squirrels were so entertaining! Usually, they run in packs and they always look like they'rehaving a blast!
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I am going to do my best to see the simple beauty of what awaits outside. Today I got to remember what it was like to be carefree. I know that I can't do that forever. I'm just over the moon at the knowledge that I can go outside and enjoy this beautiful weather.
I'm not sure it'll stay this way, but while it is, I plan on making the time count!
These are the kinds if days that help me to see that there is always something that can renew my love and joy for my job. I like knowing that.
Since having some yardwork done, I've noticed quite a few butterflies hanging around. It probably doesn't hurt that I got 2 of those colorful globe decorations and pedestals to put them on. I would have dismissed them in the past, but now I can see how delicate they are and their gracefullness. I am still the kind of person who is enchanted with creatures like butterflies, dragonflies and damselflies. I have had a couple experiences with butterflies gathering around me and landing on me. I like to think it's because I'm totally awesome, but the logical reason might be that I was standing near colorful clothes. Still, I like my explanation more.
Now, the squirrels, they are in a category of coolness that is theirs own. Those squirrels are not afraid to work for their food! I think it's a fair trade off because how many people have seen a squirell wrestling match! I have a new squirell and he just started coming to my house yesterday. That squirrel is 100% ninja and that's why we named him Ninja Squirrel". All of our squirrels have names and we try to make note of anything that we can use to tell them apart. Who knew squirrels were so entertaining! Usually, they run in packs and they always look like they'rehaving a blast!
\
I am going to do my best to see the simple beauty of what awaits outside. Today I got to remember what it was like to be carefree. I know that I can't do that forever. I'm just over the moon at the knowledge that I can go outside and enjoy this beautiful weather.
I'm not sure it'll stay this way, but while it is, I plan on making the time count!
These are the kinds if days that help me to see that there is always something that can renew my love and joy for my job. I like knowing that.
Wednesday, June 1, 2011
Fear
I really don't like waking up in pain. It's not about the pain itself, but about being blind sided by it. Well, I guess that the actual pain that I experience is a close second in the race between the intensity of the pain and the pain's ability to sneak up on me and attack when I'm least expecting it. Neither of those compares to the fear. I don't like feeling the pain, but I'm not afraid of it. My fears run much deeper than that.
I'm afraid of the unknown. Lupus is a crafty disease. It's incredibly difficult to diagnose and there are too many possible causes to peg down just one cause. There are too many possible symptoms and since no two people are the same, comparing my lupus to anyone else's lupus wouldn't be a good comparison. The thing is this; there are people who have lupus and are able to live long and relatively healthy lives with treatment. Then there's me. I'm sad that I'm not a candidate for Benlysta because of kidney involvement and the fact that I'm in an active flare. I love that the option is there for others who struggle with the stranglehold that having lupus can get on not just us, but our families. I'm afraid that I might not get the chance for treatment in this lifetime.
I'm scared of being taken over by lupus. Since my type of lupus is a multisystem type, it isn't confined to just one place. Right now, I have kidney damage and it's SLE related. I'm hopeful that it can be reversible as long as I get out of this flare. I have hemolytic anemia, B12 deficiency anemia, and iron deficiency anemia along with a positive result when I was tested for Von Willebrand's factor. I'm covered in bruises almost all of the time and I never really remember where they came from. My circulatory system isn't really ship shape. I have Raynaud's disease so I always have to take care to not get too cold. I have Sjogren's disease and that means that at any given time, I have ulcers in my mouth and sometimes they are too painful to ignore and sometimes I don't notice them at all. My eyes are always dried out and that's painful, too. I was lucky in that I don't have rheumatoid arthritis, but unlucky because I got the pain from it without the physical damage to the joints. It's polyneuropathy and it sucks! I have chronic insomnia and not getting enough sleep can trigger a flare, so that's something that weighs on me. I have a feeling that I have had lupus for much longer than I thought that I did. What other way is there to explain how out of 7 pregnancies, I only have one child. Lupus gets to me and it's frustrating to have it happen because I feel like I'm witnessing the systematic breakdown of my body and there are limits to what I do for treatment.
I'm also afraid of being a disappointment to my husband and daughter. There are days that I feel like they are the real victims. They are so strong for me and I don't know if I'll ever have the words to give to them that express how much their support, love and patience has saved me. I know that they hurt, too, but they put their feelings aside to comfort me.
I want to expel the fear. It has been useless so far and I want to enjoy life as fully as I can but the fear can be so intimidating and I lose myself in that fear. I'm full of "what if's".. I don't what anymore.
I'm afraid of the unknown. Lupus is a crafty disease. It's incredibly difficult to diagnose and there are too many possible causes to peg down just one cause. There are too many possible symptoms and since no two people are the same, comparing my lupus to anyone else's lupus wouldn't be a good comparison. The thing is this; there are people who have lupus and are able to live long and relatively healthy lives with treatment. Then there's me. I'm sad that I'm not a candidate for Benlysta because of kidney involvement and the fact that I'm in an active flare. I love that the option is there for others who struggle with the stranglehold that having lupus can get on not just us, but our families. I'm afraid that I might not get the chance for treatment in this lifetime.
I'm scared of being taken over by lupus. Since my type of lupus is a multisystem type, it isn't confined to just one place. Right now, I have kidney damage and it's SLE related. I'm hopeful that it can be reversible as long as I get out of this flare. I have hemolytic anemia, B12 deficiency anemia, and iron deficiency anemia along with a positive result when I was tested for Von Willebrand's factor. I'm covered in bruises almost all of the time and I never really remember where they came from. My circulatory system isn't really ship shape. I have Raynaud's disease so I always have to take care to not get too cold. I have Sjogren's disease and that means that at any given time, I have ulcers in my mouth and sometimes they are too painful to ignore and sometimes I don't notice them at all. My eyes are always dried out and that's painful, too. I was lucky in that I don't have rheumatoid arthritis, but unlucky because I got the pain from it without the physical damage to the joints. It's polyneuropathy and it sucks! I have chronic insomnia and not getting enough sleep can trigger a flare, so that's something that weighs on me. I have a feeling that I have had lupus for much longer than I thought that I did. What other way is there to explain how out of 7 pregnancies, I only have one child. Lupus gets to me and it's frustrating to have it happen because I feel like I'm witnessing the systematic breakdown of my body and there are limits to what I do for treatment.
I'm also afraid of being a disappointment to my husband and daughter. There are days that I feel like they are the real victims. They are so strong for me and I don't know if I'll ever have the words to give to them that express how much their support, love and patience has saved me. I know that they hurt, too, but they put their feelings aside to comfort me.
I want to expel the fear. It has been useless so far and I want to enjoy life as fully as I can but the fear can be so intimidating and I lose myself in that fear. I'm full of "what if's".. I don't what anymore.
Tuesday, May 31, 2011
Yesterday
Yesterday morning when I woke up, I was filled with dread. The first day of the work week is already rough enough, but when severe pain is factored in to the equation, it becomes brutal! I felt as though someone took a baseball bat and repeated laid into my lower back again and again. The pain made me feel like I was going to throw up and I was not in one of my better moods. That just made it seem so much worse.
It became crucial at at time to take a step back and really evaluate the type of day that I was heading toward and ask myself if a lousy day is what I really want for myself today. I was really afraid of the pain that I was dealing with because it's the first time since my flare up began that I've been in that much pain. I had to allow myself be aware of the good parts during the day that are so easy to miss when pain is in the driver's seat. That meant that I had to let some of the negativity go to the best of my ability.
My daycare children were extra lovable and that was a great mood booster. Steve called me from work to check on me and that made me feel very loved! It felt as if I had a team of angels working for me to lighten my load :). I witnessed quite a few instances of squirrels playing grab-ass, which is completely entertaining and if you haven't witnessed their tomfoolery as of yet, there is no better time than now! Also, listening to our beautiful wind chimes is a major mood lifter. I love the sound that the chimes make and I love how long that they resonate. The sound is one of the most beautiful sounds that I have ever heard.
The way that we make the choice about our day matters more than we may ever realize. I'm glad that even despite the pain that I'm feeling, I can find the happiness in a day.
I decided to get a new doctor to treat my SLE. I decided to choose a hematologist instead of a rheumatologist and I feel good about this choice. I like knowing that I will hear an entirely new set of treatment options. I know that I won't get a different diagnosis, but I feel like a different specialist may be able to provide a different vantage point.
All in all, it was a pretty good day.
It became crucial at at time to take a step back and really evaluate the type of day that I was heading toward and ask myself if a lousy day is what I really want for myself today. I was really afraid of the pain that I was dealing with because it's the first time since my flare up began that I've been in that much pain. I had to allow myself be aware of the good parts during the day that are so easy to miss when pain is in the driver's seat. That meant that I had to let some of the negativity go to the best of my ability.
My daycare children were extra lovable and that was a great mood booster. Steve called me from work to check on me and that made me feel very loved! It felt as if I had a team of angels working for me to lighten my load :). I witnessed quite a few instances of squirrels playing grab-ass, which is completely entertaining and if you haven't witnessed their tomfoolery as of yet, there is no better time than now! Also, listening to our beautiful wind chimes is a major mood lifter. I love the sound that the chimes make and I love how long that they resonate. The sound is one of the most beautiful sounds that I have ever heard.
The way that we make the choice about our day matters more than we may ever realize. I'm glad that even despite the pain that I'm feeling, I can find the happiness in a day.
I decided to get a new doctor to treat my SLE. I decided to choose a hematologist instead of a rheumatologist and I feel good about this choice. I like knowing that I will hear an entirely new set of treatment options. I know that I won't get a different diagnosis, but I feel like a different specialist may be able to provide a different vantage point.
All in all, it was a pretty good day.
Wednesday, May 25, 2011
Memories of rainy days gone by...
I remember when I used to love it when it rained when I was a little girl. I loved hearing the sound that the rain drops made as they hit the roof. The smell of rain was intoxicating! Watching the rain drops splatter on the ground and watching the rain roll down the windows was an activity that could keep me occupied for ages. I liked trying to guess where the next drop would fall! Rainy weather provided an incredibly cozy atmosphere and there was nothing better than cuddling with my mom or my dad on a rainy day. Rain also had the same effect on me that a good Thanksgiving turkey had on me! Napping on a rainy day was the best! As long as it wasn't too cold outside, I was allowed to play in the rain and that was always a great time. I would look up and let the rain fall on my face, but I didn't try to catch the rain drops in my mouth. I wanted to see how long I could look up at the rain without closing my eyes! Splashing in puddles was pretty much a given. I also liked running in the rain and trying to use the grass as a "Slip-N-Slide". I wouldn't recommend that because it almost always ends badly! Still, before I inevitably got hurt when I would play that particular game, it was awesome!
I miss being able to enjoy the rain. Now when I see that it's raining, I start worrying about the physical toll that it will take on my body. It's also a bummer to wake up in the morning and know that it has been raining based on the amount of pain that I'm in upon waking up. I would gladly deal with the pain in my joints that come with the rain, but unfortunately I also have to be cautious because this kind of weather is the kind that quickly changes the direction of my recovery from the lupus flare that I'm in. I have to be much more aware than I want to be. I want to play in the rain and I want to enjoy it for all of the reasons that I did when I was a little kid. I'm not so keen on doing the "Rainy Day Slip-N-Slide" anymore, but it would be nice to just look up and see how long I can keep my eyes open again.
One day I know that I'll get there. I won't be in a flare forever. I'm grateful for the progress that has been made in the treatment for lupus and even though I'm not a candidate for the newest treatment, I have hope that there will be a treatment option that I'll be a good candidate for! In the meantime, I'm going to live vicariously through my childhood rainy day memories.
I miss being able to enjoy the rain. Now when I see that it's raining, I start worrying about the physical toll that it will take on my body. It's also a bummer to wake up in the morning and know that it has been raining based on the amount of pain that I'm in upon waking up. I would gladly deal with the pain in my joints that come with the rain, but unfortunately I also have to be cautious because this kind of weather is the kind that quickly changes the direction of my recovery from the lupus flare that I'm in. I have to be much more aware than I want to be. I want to play in the rain and I want to enjoy it for all of the reasons that I did when I was a little kid. I'm not so keen on doing the "Rainy Day Slip-N-Slide" anymore, but it would be nice to just look up and see how long I can keep my eyes open again.
One day I know that I'll get there. I won't be in a flare forever. I'm grateful for the progress that has been made in the treatment for lupus and even though I'm not a candidate for the newest treatment, I have hope that there will be a treatment option that I'll be a good candidate for! In the meantime, I'm going to live vicariously through my childhood rainy day memories.
Monday, May 23, 2011
Totally stupid!
I watched a documentary a few nights ago and the topic was stupidity. The documentary was fascinating and very informative, but I was left with one nagging question. What constitutes stupidity? It's very hard to come up with a definition for stupidity. I know it when I see it but I can't seem to put it into words. I'm going to put in a few definitions that I find here and there and see if any of the definitions seem to fit.
Webster's Dictionary defines stupidity as: slow-witted; unintelligent; foolish; dull.
The Urban Dictionary defines stupidity as: Lack of intelligence. The most common thing known to man, followed far behind by hydrogen atoms.
There's no way that I could possibly look up every definition of stupidity, so I think that every person in the world should have their own spin on what stupidity means to them, For myself, I think that stupidity is more about wasting potential and never being willing to step outside of their comfort zone to see if they really are stupid or if they are perhaps a little scared. Stupidity is seeing the way that other people live their lives and either doesn't acknowledge the stupidity that they are witnessing or they just learn the stupidity habit from others around them. Stupidity is wasted potential.
I'm sure that there are lots of definitions about what the word "stupidity" means. I'd love to hear some feedback because it would be stupid of me not to keep my mind open to the possibility that other people might have good if not better than my definition.
I guess maybe there is some truth to the line from "Forest Gump" when he said "My momma always says that stupid is as stupid does."
Any thoughts?
Webster's Dictionary defines stupidity as: slow-witted; unintelligent; foolish; dull.
The Urban Dictionary defines stupidity as: Lack of intelligence. The most common thing known to man, followed far behind by hydrogen atoms.
There's no way that I could possibly look up every definition of stupidity, so I think that every person in the world should have their own spin on what stupidity means to them, For myself, I think that stupidity is more about wasting potential and never being willing to step outside of their comfort zone to see if they really are stupid or if they are perhaps a little scared. Stupidity is seeing the way that other people live their lives and either doesn't acknowledge the stupidity that they are witnessing or they just learn the stupidity habit from others around them. Stupidity is wasted potential.
I'm sure that there are lots of definitions about what the word "stupidity" means. I'd love to hear some feedback because it would be stupid of me not to keep my mind open to the possibility that other people might have good if not better than my definition.
I guess maybe there is some truth to the line from "Forest Gump" when he said "My momma always says that stupid is as stupid does."
Any thoughts?
Sunday, May 8, 2011
Remembering my mom on Mother's Day
I almost forgot about Mother's Day this year. Almost.
Saying that I miss my mom doesn't even even touch on how I feel. What I feel is so much more than that. The first Mother's Day without her left me feeling as if I were coming undone. I couldn't keep myself from remembering her even though I was trying my best not to. Back then I had still not given myself permission to mourn the loss of my mom and Mother's Day is not was not a good day to start the grieving process. I know that I might have seemed like I was coping well to almost anybody who spoke to me that day but that wasn't the case.
I felt like I had to hold back my grief and keep myself together. I held back so that I wouldn't cry in front of anyone. I held it all in because I felt like if I could just bottle it up, then it would get easier. I didn't understand then what I do now. It doesn't get easier no matter how emotionally detached I try to be. Time has a way of metamorphosing loss but it doesn't make it easier. Time makes coping possible, but there are some days, such as Mother's Day, when all that matters is just holding on.
Last night I was consumed by memories of my mom, both good and bad. It was odd because the memories occured when I was sleeping but they weren't dreams. Every memory was real and every memory hurts in it's own fashion, whether good or bad. I agonize over my mom's death and I replay it over and over again in my head. The pain is visceral and intense. My senses go into overdrive and I recount every sight, sound and smell when I access that memory. I can even remember the temperature in the hospital and how it compared with the temperature outside. What I remember the most is the way that I felt. I felt as though when she died, that a part of me died with her. When she died, I felt the deepest regret because there was so much more that I wanted to say to her and apologize for. I ached for my dad because he lost the woman that he loved so much for so long and he wanted to comfort his children and grandchildren, but who was going to comfort him? He shouldered that pain alone and my heart broke for him then, and it still breaks for him now. I was sad for all of the family not just because we lost her, but because I knew that she was the glue that held so much of our family together and without her, it wouldn't be very long before pieces would start to crumble and fall away. Our shared pain should have brought us together but instead, it shattered us.
I have moments on occasion when I forget that she's gone and for that moment, I feel complete. But a moment doesn't last long and once it passes, I feel that hollow spot again and I don't know whether to be thankful for the prior moment because I had my mom back, or to curse it for how deeply it cut when I remember that she's really gone.
I'm glad to have all of my memories of her because those memories are all I have to keep her alive in my heart. Every memory is beautiful and excrutiating for me. They're all bittersweet because they're all that I have of her.
My mom and I had a wonderful and complicated relationship and for that I will always be so thankful. I learned so much from her even if I didn't know it at the time! She was good like that! I love her for being the mom that she was to me. She turned even the most simple thing into a learning opportunity, like grocery shopping with me. She taught me how to read by teaching me how to read labels, coupons and advertisements while shopping with me. Her love of reading inspired mine. I know that I had a way of really making her angry but even when I did, I felt loved no matter what. She never had a problem with showing affection and saying "I love you" which seems like it's a given for what moms do, but nonetheless, I'm so glad that she was loving to me.
To say simply that I miss her and that I love her cheapens what she meant to me. She was so much more than that. I keep her picture in my wallet and I have pictures of her around my house. I keep her old driver's license and a check that she wrote me the month before she died in my wallet, too. It hurts like Hell to have these reminders around but the thought of not having them is a much worse thought. I hold on to every bit of her that I can and while it comforts me, it's a bittersweet comfort.
I'd like to think that when she died, she took with her the piece of me that died with her. I'd like to think that she is holding that piece of my heart, just like I hold her in my memory.
Saying that I miss my mom doesn't even even touch on how I feel. What I feel is so much more than that. The first Mother's Day without her left me feeling as if I were coming undone. I couldn't keep myself from remembering her even though I was trying my best not to. Back then I had still not given myself permission to mourn the loss of my mom and Mother's Day is not was not a good day to start the grieving process. I know that I might have seemed like I was coping well to almost anybody who spoke to me that day but that wasn't the case.
I felt like I had to hold back my grief and keep myself together. I held back so that I wouldn't cry in front of anyone. I held it all in because I felt like if I could just bottle it up, then it would get easier. I didn't understand then what I do now. It doesn't get easier no matter how emotionally detached I try to be. Time has a way of metamorphosing loss but it doesn't make it easier. Time makes coping possible, but there are some days, such as Mother's Day, when all that matters is just holding on.
Last night I was consumed by memories of my mom, both good and bad. It was odd because the memories occured when I was sleeping but they weren't dreams. Every memory was real and every memory hurts in it's own fashion, whether good or bad. I agonize over my mom's death and I replay it over and over again in my head. The pain is visceral and intense. My senses go into overdrive and I recount every sight, sound and smell when I access that memory. I can even remember the temperature in the hospital and how it compared with the temperature outside. What I remember the most is the way that I felt. I felt as though when she died, that a part of me died with her. When she died, I felt the deepest regret because there was so much more that I wanted to say to her and apologize for. I ached for my dad because he lost the woman that he loved so much for so long and he wanted to comfort his children and grandchildren, but who was going to comfort him? He shouldered that pain alone and my heart broke for him then, and it still breaks for him now. I was sad for all of the family not just because we lost her, but because I knew that she was the glue that held so much of our family together and without her, it wouldn't be very long before pieces would start to crumble and fall away. Our shared pain should have brought us together but instead, it shattered us.
I have moments on occasion when I forget that she's gone and for that moment, I feel complete. But a moment doesn't last long and once it passes, I feel that hollow spot again and I don't know whether to be thankful for the prior moment because I had my mom back, or to curse it for how deeply it cut when I remember that she's really gone.
I'm glad to have all of my memories of her because those memories are all I have to keep her alive in my heart. Every memory is beautiful and excrutiating for me. They're all bittersweet because they're all that I have of her.
My mom and I had a wonderful and complicated relationship and for that I will always be so thankful. I learned so much from her even if I didn't know it at the time! She was good like that! I love her for being the mom that she was to me. She turned even the most simple thing into a learning opportunity, like grocery shopping with me. She taught me how to read by teaching me how to read labels, coupons and advertisements while shopping with me. Her love of reading inspired mine. I know that I had a way of really making her angry but even when I did, I felt loved no matter what. She never had a problem with showing affection and saying "I love you" which seems like it's a given for what moms do, but nonetheless, I'm so glad that she was loving to me.
To say simply that I miss her and that I love her cheapens what she meant to me. She was so much more than that. I keep her picture in my wallet and I have pictures of her around my house. I keep her old driver's license and a check that she wrote me the month before she died in my wallet, too. It hurts like Hell to have these reminders around but the thought of not having them is a much worse thought. I hold on to every bit of her that I can and while it comforts me, it's a bittersweet comfort.
I'd like to think that when she died, she took with her the piece of me that died with her. I'd like to think that she is holding that piece of my heart, just like I hold her in my memory.
Tuesday, May 3, 2011
Martin Luther King, Jr. had it right!
I remember 9/11 like it was yesterday. I remember the shock of seeing the news footage and thinking to myself that this couldn't be real. Sadly it was all too real. I didn't know any of the people who lost their lives that day but I mourned their loss just the same. It was a dark time for so many people and a dark time for our country as a whole. There were definitely times when I believed that the death of Osama bin Laden would bring about justice but if I am truly honest with myself, I know that it was vengeance that I wanted, not justice.
Just today alone, I have seen the same amazing Martin Luther King, Jr. quote posted on Facebook in response to the news of the death of bin Laden. I think that it bears repeating.
"I mourn the loss of thousands of precious lives, but I will not rejoice in the death of one, not even an enemy. Returning hate for hate multiplies hate, adding deeper darkness to a night already devoid of stars. Darkness cannot drive out darkness: only light can do that. Hate cannot drive out hate: only love can do that" ~ Martin Luther King, Jr. ~
I can't celebrate this man's death no matter how much pain that his actions and orders have caused. It's not because I agree with his actions or anything along those lines. His death doesn't undo the lives that he was responsible for snuffing out. It doesn't turn back the clock. It just adds to the death toll and I just can't bring myself to rejoice in his death. There is already so much death and suffering in the world. There's so much hate and anger as well as hopelessness and despair. What I wish there was more of is love and light. I'd like to see more acts of kindness and more empathy for our fellow human beings, no matter where they are in the world.
It may be naive but I hope for it just the same.
Just today alone, I have seen the same amazing Martin Luther King, Jr. quote posted on Facebook in response to the news of the death of bin Laden. I think that it bears repeating.
"I mourn the loss of thousands of precious lives, but I will not rejoice in the death of one, not even an enemy. Returning hate for hate multiplies hate, adding deeper darkness to a night already devoid of stars. Darkness cannot drive out darkness: only light can do that. Hate cannot drive out hate: only love can do that" ~ Martin Luther King, Jr. ~
I can't celebrate this man's death no matter how much pain that his actions and orders have caused. It's not because I agree with his actions or anything along those lines. His death doesn't undo the lives that he was responsible for snuffing out. It doesn't turn back the clock. It just adds to the death toll and I just can't bring myself to rejoice in his death. There is already so much death and suffering in the world. There's so much hate and anger as well as hopelessness and despair. What I wish there was more of is love and light. I'd like to see more acts of kindness and more empathy for our fellow human beings, no matter where they are in the world.
It may be naive but I hope for it just the same.
Tuesday, April 19, 2011
Wearing my "Big Girl" pants...
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!
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!
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.
Tuesday, March 15, 2011
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/
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/
Monday, March 14, 2011
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!
The mind is pretty amazing tool!
OK, so I decided yesterday to try my hand at bendng a spoon using the power of my mind. Having lupus really has the ability to limit what you can do with your hands and more importantly, what you cannot do with your hands. Many times my hands refuse to cooperate with me and it frustrates me in ways that I never imagined that it could.
I watched a couple YouTube videos on how to bend spoons and I decided to put them to work. My first couple attempts were epic failures but on my third attempt, I was able to bend the spoon in a really unique way! It was unreal! After that, Steve and I decided to see how I would fare with a butter knife. I figured, "Hey, why not?" and on the first attempt, not only did I bend the knife, but I broke it in half! (Don't worry, pictures are coming!)
This feels like a major accomplishment for me! Lupus has made me feel like I can't do anything and even though bending spoons may not seem like a victory, in my mind it was a huge victory! I feel empowered for the first time in a very long time!
I watched a couple YouTube videos on how to bend spoons and I decided to put them to work. My first couple attempts were epic failures but on my third attempt, I was able to bend the spoon in a really unique way! It was unreal! After that, Steve and I decided to see how I would fare with a butter knife. I figured, "Hey, why not?" and on the first attempt, not only did I bend the knife, but I broke it in half! (Don't worry, pictures are coming!)
This feels like a major accomplishment for me! Lupus has made me feel like I can't do anything and even though bending spoons may not seem like a victory, in my mind it was a huge victory! I feel empowered for the first time in a very long time!
Wednesday, March 9, 2011
Think small
Last night I read some pretty amazing information that is related to alternative methods of healing. I've researched my disease and read about clinical trials for drugs for treatment. I've made it a point to learn as much as I can about lupus and the other illnesses that can be present in a lupus patient as well. I can tell you what treatments people usually receive, and I can tell you how the treatment changes in a person who is in an active flare and when the lupus is inactive. I am learning about what triggers flares, mine in particular and how to best avoid them. I can tell you about symptoms, ranging from malar rashes to neurological symptoms and so many more in between. What I can't tell you, however, is why lupus happens. There are lots of possible reasons, but nothing that is a solid reason. It's a bunch of "could be caused by" and "possibly hereditary" and the like.
Last night I started reading about DNA and RNA and I found myself wishing that I had paid closer attention during Biology class when I was younger. I have to admit that I found it boring and at the time, I just wanted to learn about the more exciting parts of biology. That was my mistake because after reading about DNA and RNA last night, I realized that DNA and RNA really are life! It's all too easy to take them for granted when you don't pay close enough attention to what they do for us. They are hard workers and unless something goes wrong with our health, they remain behind the scenes, still doing their jobs and still not being noticed. It's a good thing that DNA & RNA don't have egos! They know how to be team players!
When I first found out that I was sick, I think that I blamed pretty much everyone and everything. I had seriously misdirected anger and my genetics weren't immune to that anger. I'm tired of feeling angry and I'd much rather find a way to feel empowered, so I'm choosing to "think small".
Last night I started reading about DNA and RNA and I found myself wishing that I had paid closer attention during Biology class when I was younger. I have to admit that I found it boring and at the time, I just wanted to learn about the more exciting parts of biology. That was my mistake because after reading about DNA and RNA last night, I realized that DNA and RNA really are life! It's all too easy to take them for granted when you don't pay close enough attention to what they do for us. They are hard workers and unless something goes wrong with our health, they remain behind the scenes, still doing their jobs and still not being noticed. It's a good thing that DNA & RNA don't have egos! They know how to be team players!
When I first found out that I was sick, I think that I blamed pretty much everyone and everything. I had seriously misdirected anger and my genetics weren't immune to that anger. I'm tired of feeling angry and I'd much rather find a way to feel empowered, so I'm choosing to "think small".
Tuesday, March 8, 2011
What drives me...
I have always known that I wanted to write. I enjoy it thoroughly but the issue has always been that I never know quite what I want to write about. I have this nasty habit of starting to write and then losing my passion for what I was writing about. I have an unreal amount of writing projects that I've started and never finished. The good news for me is that I finally know what to write about. The bad news is that this is no love story or fairytale. It's an autobiographical non-fiction.
Everything changes when you learn that you have lupus. That pretty much sums it up. I was diagnosed with SLE in October of 2010 and I'm still learning how to adjust to the changes. I got sick in the beginning of August and I didn't really think much of it. I just went about my business and when I was still sick two weeks later, I went to my doctor. Since that time, I've felt more like those little tomato shaped cushions that seamstresses use to stick their pins in than an actual human being. To make matters worse for me, SLE brought along a bunch of buddies for the ride. I have a severe B12 deficiency, hemolytic anemia, iron deficiency anemia,neutropenia, Sjogren's, Von Willebrand's disease, Raynaud's disease, peripheral neuropathy and a lot of vitamin and mineral deficiencies. The hardest part for me was learning that I also have lupus nephritis. I've had a history of kidney infections since I was a child so that adds an extra jolt of terror to my heart. It seems as if every time that I see one of my doctors, I find out about another ailment that I have. SLE is affecting so many of parts of me and now I know that I have to learn to adapt. I will need to learn how to maintain balance. I have to learn to bend and not break. I know that it'll be a lesson in acceptance, and I know that it'll be hard.
Sometimes I feel like I'm drowning in my diagnosis. It saturates me. Lupus is a factor in every decision that I make. I can't even go outdoors without making sure that the temperature and wind chill aren't going to make my joints hurt more than they already do. I'm anxious about being in stores where everyone touches everything and the notion of all of those germs being on everything makes me cringe. How can I not worry? I've seen children lick shopping carts! The harder that I fight against the changes that lupus requires me to make, the more that I feel defined by lupus. I'm hoping that by learning to bend without breaking, I will be able to take my life back, even though it won't be exactly as it was before.
The value of patience
I am waiting. It seems like I'm always waiting. Waiting for the weather to warm up. Waiting to call my dad so that I can avoid speaking to anyone but my dad. Waiting for my doctor to call me with lab results. I have used the phrase "Patience is a Virtue" so many times with so many children but now when I need to apply it to myself, I find myself completely incapable of being patient.
I have to imagine that the value of patience comes from the feelings of dread and stress that one can save themselves from if only one can actually be patient.
I guess in the meantime, I'll work on that patience bit some more.
I have to imagine that the value of patience comes from the feelings of dread and stress that one can save themselves from if only one can actually be patient.
I guess in the meantime, I'll work on that patience bit some more.
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