It seems I've been finding every excuse to not post a report/blog/update. I have so many thoughts that creep through my brain day in and out, and so many that I actually want to share. ..and then I don't. I'm making the choice to spend 5 mins right now, to think about my journey, and to share those thoughts with you.
Alls good. Thanks.
HA!! Isn't that how we typically respond when people ask us "How are you?". I expect its really small talk and no one truly cares to know what's going on. So I don't dive in. Then I shake myself, and think, "Ya know what, if they don't want to know, they shouldn't have asked"....and I start to rattle off my 'stuff'.
Why do we shy away from our stuff? Is it because we don't want to burden anyone with it? Maybe we're tired of hearing ourselves talk? Maybe we don't feel that we're really interesting enough, or valuable, that someone would really care to know more about us. Yes to all of it, I'm sure, at one point or another.
For me, I've been tired of MG and sick of talking about it. I'm so blessed to have the experiences we do, through Myasthenia Gravis, but damn. Now, I'm only being blunt with you, because I'm pretty sure you'll understand me, not because I'm tired of being cared about or worried over. That's not my point! I've taken a mental break from the MG/MS game, because I needed to recharge myself. You have to care for your soul and be strong for the next battle.
In a nutshell however, all is great! We are now 8+ months since the infusion!!! Amen, God is great! I was able to enjoy myself this weekend, by swimming. Yes, swimming! I can't tell you how many nightmares I've had about falling into a body of water, with a chest catheter in. Ug. This weekend, we travel to the mountains to enjoy climbing around a bit. Next month, Lord willing, we'll travel to a beach to enjoy laying around a bit. We have traveled so much this past year, and what a joy it has been.
It has been nice to travel and not worry about bandages and supplies and symptoms and medical facilities and stuff. It has been a joy to be able to (cautiously) plan adventures with friends, family, on our own. It has been a wonderful break from a routine of hospitals and doctors (though I love them all dearly!). So many ask 'Where are you going next?" or they comment "You two travel more than anyone I know." That's beautiful! Who knows how long we'll have to travel? Who knows how long the peace and quiet will reside with us? Who knows how many National parks there are in the US? I don't know any of it...and I'm interested to find out!
The antibody levels in my blood have begun to increase again, which means a follow up infusion is in the near future. We'll schedule that soon and when we do, I'll embrace the therapy, because I've accepted it is necessary for me. This infusion therapy is a gift, after so much time without it. A gift in teaching me how to choose to live my life. Better put, choosing to live life...because I can.
..was that 5 minutes?
[ ;) back atcha]
Monday, August 27, 2012
Wednesday, July 11, 2012
No No to the 'NegaNinny'
Seven months! It has been this long since the last plasma pheresis treatment. Wowzers!!! My last blood check proved the Rituxian continues to prove beneficial for me, and we'll check blood again this month. To be honest, I'm starting to reach a place where it feels too good to be true. Is medical remission really possible? MG doesn't go away!
Yes it IS possible, and everything is great, there are no signs of MG right now...or so I think...or maybe there are...am I ignoring them? I do have a few physical symptoms that are ever present, but this is expected. Now, I'm over thinking things and can't recall how long I've noticed these twinges. Are they ramping up? Are they steady? Should I panic? I sure know how to wear myself down! Panic creates worry which triggers MG! Self fulfilling prophecy, right? Ug.
So, I'm working on relaxing myself. More stretching. More calm breathing exercises. More rest. More exercise (yes, they do go together). Better foods. Better thoughts. Better focus...maybe better focus means less focus? I could go on.
"Dear Lord, I pray your continued blessings over this fascinating shell of a body you've plopped my spirit into. I pray for continued remission from the MG and MS. I pray for continued 'good' days and the energy to remain focused on all things positive, no matter how my body is truly fighting. I also pray that this 'lil Negative Ninny' who is dancing in my head, will get lost. Aaaamen!"
I am so blessed to be where I am today, after so many days of struggle. All remains awesome, no complaints. We'll have blood drawn tomorrow and pray these results mirror the joy we feel today!
Thanks for all your support and love!! xo Rach
Yes it IS possible, and everything is great, there are no signs of MG right now...or so I think...or maybe there are...am I ignoring them? I do have a few physical symptoms that are ever present, but this is expected. Now, I'm over thinking things and can't recall how long I've noticed these twinges. Are they ramping up? Are they steady? Should I panic? I sure know how to wear myself down! Panic creates worry which triggers MG! Self fulfilling prophecy, right? Ug.
So, I'm working on relaxing myself. More stretching. More calm breathing exercises. More rest. More exercise (yes, they do go together). Better foods. Better thoughts. Better focus...maybe better focus means less focus? I could go on.
"Dear Lord, I pray your continued blessings over this fascinating shell of a body you've plopped my spirit into. I pray for continued remission from the MG and MS. I pray for continued 'good' days and the energy to remain focused on all things positive, no matter how my body is truly fighting. I also pray that this 'lil Negative Ninny' who is dancing in my head, will get lost. Aaaamen!"
I am so blessed to be where I am today, after so many days of struggle. All remains awesome, no complaints. We'll have blood drawn tomorrow and pray these results mirror the joy we feel today!
Thanks for all your support and love!! xo Rach
Sunday, June 24, 2012
My-uh-sten-knee-uh Graah-vis
June is Myasthenia Gravis (MG) awareness month, as so deemed by the Myasthenia Gravis Foundation of America. I'm glad they did! I AM aware that my body has this facinating neuromuscular disorder/disease, and having a designated month reminds me to reflect.
Yeah, this condition can be a real drag...literally. At the same time, it has really been a blessing in my life. Of course, there are times I either forget that MG is with me, or consider what life would have been like without MG. Neither scenario makes me happy.
I do not enjoy the times when I forget that MG is part of my life. Why? Small fear I suppose. When you forget there is an enemy, thats when it sneaks up on you. This applies to so much in life. Neither do I care to do the day dream thing, "What would it be like if I didn' start to slur or begin to see double?" because that just leads to the silly question, "What did I do to bring this on myself?" ...and like I said, that's just silly 'cuz I didn't do anything.
What I DO enjoy doing is taking a moment to think about the oh so many people we've met, because my body has been graced with MG: doctors, nurses, patients, true friends, new friends, prayerful friends, etc. We've shared in others' stories, we've learned a great deal about the human body, we've learned a lot about insurance and medical bills, we've gained perspective, and we've grown stronger in our faith. I can say 'we' because this adventure with MG, quickly solidified our journey together.
Thank goodness June is MG awareness month, because it gives me good reason to reflect, and to share with you, my journey with this rare condition, which is unknown to many.
Can you say My-uh-sten-knee-uh Graah-vis? Great! You ARE aware too.
Yeah, this condition can be a real drag...literally. At the same time, it has really been a blessing in my life. Of course, there are times I either forget that MG is with me, or consider what life would have been like without MG. Neither scenario makes me happy.
I do not enjoy the times when I forget that MG is part of my life. Why? Small fear I suppose. When you forget there is an enemy, thats when it sneaks up on you. This applies to so much in life. Neither do I care to do the day dream thing, "What would it be like if I didn' start to slur or begin to see double?" because that just leads to the silly question, "What did I do to bring this on myself?" ...and like I said, that's just silly 'cuz I didn't do anything.
What I DO enjoy doing is taking a moment to think about the oh so many people we've met, because my body has been graced with MG: doctors, nurses, patients, true friends, new friends, prayerful friends, etc. We've shared in others' stories, we've learned a great deal about the human body, we've learned a lot about insurance and medical bills, we've gained perspective, and we've grown stronger in our faith. I can say 'we' because this adventure with MG, quickly solidified our journey together.
Thank goodness June is MG awareness month, because it gives me good reason to reflect, and to share with you, my journey with this rare condition, which is unknown to many.
Can you say My-uh-sten-knee-uh Graah-vis? Great! You ARE aware too.
Thursday, June 14, 2012
Being Mindful
Hey...I'm Rachel...nice to meet ya! Oh? We've met before...OH YES!! I'M SORRRRRY, please forgive me. We have met! My mind..it leaves me sometimes..but not today.
Why today is my mind with me? I suppose its because I'm being mindful. Full of mind? Full of my mind? Not likely...hehe...ok, this is my own weak humor.
Today is a special day for me, as it marks 6 months since I last required Plasmapheresis. If you've been reading with me for a bit, you know what I'm talking about. If you're new to this reality check, let me give you the short version:
In 2008, I began to show symptoms for a neuromuscular disorder known as Myasthenia Gravis (MG). This disease can render your muscles weak and sometimes useless. Typically MG impacts those muscles in your bulbar region. This means diaphragm and up. "Head, shoulders, sometimes knees, sometimes toes". Each person with MG has a different experience. Mine resulted in several hospital stays, many variations of medications, meeting doctors and nurses all over the state of Texas (dont mess with Texas!), and reaching a point where being able to breath on my own, was a chore.
I consider MG to be a ninja disease. By this I mean you have NO idea its there, and then *BAM* you're sucking wind, having a hard time walking, arms can't wash your hair, your eyes can't maintain a straight gaze, your diaphram cant expand, your jaw can't chew and your throat sure as heck wont manage that large piece of steak you just cut. You went from being super active to having a feeding tube jammed down your nose (NOT fun!) and fall warning socks slipped onto your feet.
What causes MG? No one knows, but when this autoimmune disease develops, signals from your brain, can not reach your muscles. The signal is blocked! For the science nerds, the signal is blocked by antibodies at the neuromuscular juncture, preventing acetylcholine recptors on the postsynaptic gap side of the river. That said, sometimes the problem lies with the cattle herding dogs, on the postsynapitc side of the equation, in that the antibodies are preventing the MuSK protien from hearding the other little protiens to their pens. (pretty sure I just failed my science test)
Bored yet? SO - MG, Ninja disease, doesn't play nice, doesn't really go away, medicine can help, OR ...if you're stubborn like me... medicine does not always help, but modern science, willing Doctors, and prayer warriors do!
Back to my 6 month mark. Since this journey began in 2008, my body has required the blood be cleaned up weekly, sometimes every other day. I would sit next to a large machine that would basically wash my blood. Plasmapheresis involves the blood flowing into a large spinning machine that separates your red blood cells from the plasma. Plasma goes to the trash because the antibodies live here! Red blood cells are paired up with a plasma replacement, and returned to your body. All of this took place through a permacath (tubes) installed in my chest wall. Super sexy. Not.
Today, it has offically been SIX WHOLE MONTHS since I've required a plasmapheresis treatment! Why? Doctors who my husband Lee and I have come to know and trust, were willing to try something different with me. We tried an infusion therapy that is new for MG. It works!! God sent angles our way, for sure!
The MG isn't gone, its just taking a nap. I'm ok with this! Right now, I'm back to my healthy weight, have lost the bloat associated from a year of Prednisone, and am slowly reminding my muscles and joints what it means to exercise.
If you've read this far, you ARE a champ. Thanks for hanging with me. The month of June is considered Myashtenia Gravis Awareness Month. I do hope that in reading this, you're now more aware that this disease exisist.
Be blessed!
Why today is my mind with me? I suppose its because I'm being mindful. Full of mind? Full of my mind? Not likely...hehe...ok, this is my own weak humor.
Today is a special day for me, as it marks 6 months since I last required Plasmapheresis. If you've been reading with me for a bit, you know what I'm talking about. If you're new to this reality check, let me give you the short version:
In 2008, I began to show symptoms for a neuromuscular disorder known as Myasthenia Gravis (MG). This disease can render your muscles weak and sometimes useless. Typically MG impacts those muscles in your bulbar region. This means diaphragm and up. "Head, shoulders, sometimes knees, sometimes toes". Each person with MG has a different experience. Mine resulted in several hospital stays, many variations of medications, meeting doctors and nurses all over the state of Texas (dont mess with Texas!), and reaching a point where being able to breath on my own, was a chore.
I consider MG to be a ninja disease. By this I mean you have NO idea its there, and then *BAM* you're sucking wind, having a hard time walking, arms can't wash your hair, your eyes can't maintain a straight gaze, your diaphram cant expand, your jaw can't chew and your throat sure as heck wont manage that large piece of steak you just cut. You went from being super active to having a feeding tube jammed down your nose (NOT fun!) and fall warning socks slipped onto your feet.
What causes MG? No one knows, but when this autoimmune disease develops, signals from your brain, can not reach your muscles. The signal is blocked! For the science nerds, the signal is blocked by antibodies at the neuromuscular juncture, preventing acetylcholine recptors on the postsynaptic gap side of the river. That said, sometimes the problem lies with the cattle herding dogs, on the postsynapitc side of the equation, in that the antibodies are preventing the MuSK protien from hearding the other little protiens to their pens. (pretty sure I just failed my science test)
Bored yet? SO - MG, Ninja disease, doesn't play nice, doesn't really go away, medicine can help, OR ...if you're stubborn like me... medicine does not always help, but modern science, willing Doctors, and prayer warriors do!
Back to my 6 month mark. Since this journey began in 2008, my body has required the blood be cleaned up weekly, sometimes every other day. I would sit next to a large machine that would basically wash my blood. Plasmapheresis involves the blood flowing into a large spinning machine that separates your red blood cells from the plasma. Plasma goes to the trash because the antibodies live here! Red blood cells are paired up with a plasma replacement, and returned to your body. All of this took place through a permacath (tubes) installed in my chest wall. Super sexy. Not.
Today, it has offically been SIX WHOLE MONTHS since I've required a plasmapheresis treatment! Why? Doctors who my husband Lee and I have come to know and trust, were willing to try something different with me. We tried an infusion therapy that is new for MG. It works!! God sent angles our way, for sure!
The MG isn't gone, its just taking a nap. I'm ok with this! Right now, I'm back to my healthy weight, have lost the bloat associated from a year of Prednisone, and am slowly reminding my muscles and joints what it means to exercise.
If you've read this far, you ARE a champ. Thanks for hanging with me. The month of June is considered Myashtenia Gravis Awareness Month. I do hope that in reading this, you're now more aware that this disease exisist.
Be blessed!
Tuesday, April 3, 2012
night night
Its really late and well past my bedtime, and yet I find myself logging into Blogger, so write you a note. All is well here, and remains calm and stable. We continue to meet with Drs. when scheduled, and anticipate next test or appointments.
In addition to this, we're just living life. Its really odd to me, to be so steady now with the MG and MS that I tend to forget sometimes, that these two hang out with me daily. It has happened before, that I worry I will forget. My fear...as soon as I forget what its like to live with the symptoms, they'll quickly rejoin me. Not likely, but a quiet fear we all carry, with regards to so many different things in our life. Its the one or two things that sit quietly in the dark corner of our brains, just waiting for you to ignore them. If you pay attention to 'it' on a steady frequency, all remains calm. Turn your back for a moment, and 'it' sneaks out of the corner and onto the main stage. "Tah dah"
While feeling so much better, I've also overwhelmed myself with life. Feeling a bit over committed and stressed about missing deadlines or letting people down. So, what do you do when this happens? Well, I tend to wall up and protect myself by disengaging. Creating quiet. Release control..again. This crazy control thing is what landed me here to begin with.
Ok, so maybe this was more of a late night mind dump. Simply trying to remember to stand up and enjoy each aspect of life, with or without symptoms, and to relax about it at the same time. Eh well...sleep will help. G'Night
In addition to this, we're just living life. Its really odd to me, to be so steady now with the MG and MS that I tend to forget sometimes, that these two hang out with me daily. It has happened before, that I worry I will forget. My fear...as soon as I forget what its like to live with the symptoms, they'll quickly rejoin me. Not likely, but a quiet fear we all carry, with regards to so many different things in our life. Its the one or two things that sit quietly in the dark corner of our brains, just waiting for you to ignore them. If you pay attention to 'it' on a steady frequency, all remains calm. Turn your back for a moment, and 'it' sneaks out of the corner and onto the main stage. "Tah dah"
While feeling so much better, I've also overwhelmed myself with life. Feeling a bit over committed and stressed about missing deadlines or letting people down. So, what do you do when this happens? Well, I tend to wall up and protect myself by disengaging. Creating quiet. Release control..again. This crazy control thing is what landed me here to begin with.
Ok, so maybe this was more of a late night mind dump. Simply trying to remember to stand up and enjoy each aspect of life, with or without symptoms, and to relax about it at the same time. Eh well...sleep will help. G'Night
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