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...
Tuesday, October 4, 2011
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!
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