I keep going back and forth over the opportunity to be a part of the "Illuminate" clinical studies that people who have diagnosed SLE can take part in. It shouldn't be so hard because I've always maintained that I want to take every chance that I can to get better. I just didn't realize that a study of this magnitude could happen so quickly and that's scaring me more that I thought possible.
Maybe my fear is stemming from the absolute certainty that for the time that the clinical studies and trials are being held that my life will be altered. I'm frightened of that because I take comfort in having as much consistency in my life as is humanly possible. Part of the fear for me is also that I'm afraid of getting my hopes up, believing that it might just work for me, and then finding out that I can't be helped by the clinical trial results. I'm also not too keen on more doctor apartments, additional blood work in addition to my regular blood work. I know that I would feel anxious over whether I'm recieving the active course of drug therapy or if I'm on the placebo. Then there's the possibility of having to travel to take part in the clinical studies and that further complicates the situation. It's all so overwhelming to me right now.
On a positive note, at least the time, money and effort is being put toward lupus which is phenomenal! I would love to be a part of the clinical trials because the need for progress when it comes to not just lupus, but other autoimmune diseases.
I'm a candidate for the study and I even have the name of the doctor and facility where the clinical studies are going to take place. Again, I'm scared. I want to do the study, but there are too many objects that are standing in my way. I really want to do something that will matter and will help further the clinical studies make some serious headway.
I wish that I knew the path to take.
Tuesday, February 28, 2012
Monday, January 23, 2012
I watched "The Green Mile" this weekend
It really spoke to me! As strange as it might seem, I watched that movie and I thought to myself that if I could take Sadie's (our dog) sickness away, I would do it without hesitating. She is so sick and sad, she can't tell us how much she hurts and she has to feel all of the pain on her own. I would never want that for her. I love her more than I ever thought that I could love a pet and the idea of her suffering is terrible. I really love my dog! I love her enough to take her pain away.
It's different for me. I know how to make sense of what is going on in my body and I can talk to people about it and cry about it and rage about it. That makes it easier. I know that I don't have to handle it all on my own and that I have people who love me enough to be a shoulder to lean on when I feel like I can't do it on my own. Sadie doesn't have that and she never will. Even when I keep my pain to myself, at least I can make sense of it in my head and that seems to help me out. I convince myself that it won't last forever and that medical advances are happening all of the time and that gives me a small measure of comfort. Sadie doesn't understand that and I have to imagine that because she doesn't get what's happening to her body, that it probably makes her pain so much worse.
It's not even a question for me. If I had John Coffey's power to use to take away my Sadie's agony, I would do it. She is a part of my family and I love her so very much. She is powerless to help herself and I can think of no better gift to give her than to ease her pain, if only I could.
I know that this is a bit of an odd blog, but it's been on my mind.
It's different for me. I know how to make sense of what is going on in my body and I can talk to people about it and cry about it and rage about it. That makes it easier. I know that I don't have to handle it all on my own and that I have people who love me enough to be a shoulder to lean on when I feel like I can't do it on my own. Sadie doesn't have that and she never will. Even when I keep my pain to myself, at least I can make sense of it in my head and that seems to help me out. I convince myself that it won't last forever and that medical advances are happening all of the time and that gives me a small measure of comfort. Sadie doesn't understand that and I have to imagine that because she doesn't get what's happening to her body, that it probably makes her pain so much worse.
It's not even a question for me. If I had John Coffey's power to use to take away my Sadie's agony, I would do it. She is a part of my family and I love her so very much. She is powerless to help herself and I can think of no better gift to give her than to ease her pain, if only I could.
I know that this is a bit of an odd blog, but it's been on my mind.
Wednesday, November 2, 2011
This is going to hurt
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
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
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.
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