Happy Thanksgiving! There is so much to be thankful for and the words are constantly spinning in my head. Do you find that sometimes the words really aren't there? ...There are no words. Sometimes you simply feel what you're thankful for, or maybe you know what you're thankful for, but can't find a word. I'm in that place this week. There really aren't words, but to know me, is to know this wont stop me from rambling right along.
Thank you, thank you to the handful of friends (and you are!) who nudged me along. "We last read you were taking a nap in the infusion room...did you wake up?". Yeppers, I did, and all went very well.
Four years ago today (2008), my first MG symptom came on the scene. Woke up, brushed my teeth and was unable to spit the toothpaste out because my tongue would not move (awkward - try it sometime). A few months later we received our diagnosis. Skip ahead two years (2010) around this same time, we learned of the MS diagnosis too! At this time in my disease process, we were relying on plasmapheresis multiple times in a week to halt the MG, and daily shots to slow the MS. One year ago (2011) around this same time, we began our journey with the last drug we knew to try, Rituxan. This year (2012), yesterday, I attempted...I mean we COMPLETED a 5mile fun run. Amen? Oh heck yeah!
We wogged (walk+jog) our 5 miles, but by golly, we finished! Yes, I slept through the 4th quarter of the football game last night, and it's ok. Yes, every muscle is sore today, and that's really ok because I'm reminded that they worked! Yes, I'll hit the wall later today, and that's ok too, because I'm still breathing!
Here's where the words are a bit lost for me. I have nothing but joy for the journey we've had these past 4 years. Would you wish it on anyone? No. Could it have been far worse? Yes!
Through this journey, I've met soooo many amazing, wonderful, kind, joyous, warm people, and many I now call friends. This journey immediately refined the relationship Lee and I have. This journey accelerated my appreciation for life and death. This journey showed me how easy it is to become vacuum packed in our own little worlds, so that we aren't aware of those around us and the burdens they bare. This journey strengthened my faith in GOD. This journey has shown me what beautiful, amazing, intricate creations we are, and that we are not simply understood, nor should we be. This journey has proven that not one person has the right solution, but that through many willing people with like focus, remedies can be found.
I could preach.
This week, I am thankful for so much, and to list it all would be a futile attempt, but the words keep scooting through my mind. In brief though, I'm thankful for my faith in God, for my family and friends who have been lock step, for a medical industry which I so highly respect, for a body that remains strong enough to fight, for a spirit that will not remain quiet, and for electronic mediums so that I can continue to share my lack of words. HA!!
Leftovers anyone? Lets eat!
Friday, November 23, 2012
Tuesday, October 16, 2012
Just another day in the Infusion lab.
The Benadryl is pumping into my arm right now, and sleep will soon follow. Its Infusion time! We've made it ten whole months, since my last IV infusion of Rituxan. Bloodwork and mild...very mild...MG symptoms, are my guide. I feel good and wouldn't know my body was fighting anything. Oh the joy of denying reality.
I'm sitting in an Oncology Infusion lab, amongst lots of quiet talk and beeping machines. I suspect most everyone here is receiving chemotherapy of some variety. Each patient entertains him or herself with a computer or a book, some nap, others chat quietly. I can tell when someone has been visiting with some regularity, as the Nurses call them by name and hugs are exchanged when they enter. They remembered me today, and even noticed a difference in hair color (yeah, I color, so?). Its a feeling a familiarity and being with friends, that helps keeps the blood pressure low, and they check each half hour.
Its so easy to get wrapped up in my day to day routine and any stress that comes with this. In revisiting my hospital family, I remember there is so much more to think about. One gentleman just arrived, and he brought baked goods to share. We learned last year, this behavior is fairly common...and tasty! Today's cake is intended to celebrate this gentleman's birthday. Ironic and beautiful!
No matter your struggles, the hurdles or pain, remember that each day is worth it. Celebrate life!
I'm sitting in an Oncology Infusion lab, amongst lots of quiet talk and beeping machines. I suspect most everyone here is receiving chemotherapy of some variety. Each patient entertains him or herself with a computer or a book, some nap, others chat quietly. I can tell when someone has been visiting with some regularity, as the Nurses call them by name and hugs are exchanged when they enter. They remembered me today, and even noticed a difference in hair color (yeah, I color, so?). Its a feeling a familiarity and being with friends, that helps keeps the blood pressure low, and they check each half hour.
Its so easy to get wrapped up in my day to day routine and any stress that comes with this. In revisiting my hospital family, I remember there is so much more to think about. One gentleman just arrived, and he brought baked goods to share. We learned last year, this behavior is fairly common...and tasty! Today's cake is intended to celebrate this gentleman's birthday. Ironic and beautiful!
No matter your struggles, the hurdles or pain, remember that each day is worth it. Celebrate life!
Monday, August 27, 2012
Rambling - 5 mins...GO!
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]
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]
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
Saturday, March 17, 2012
...because I can
Life is so beautiful! I'm sitting at the table, the porch (some call it a patio) door is wide open, there is cool morning air today, and my coffee is tasty! I'm avoiding chores by stalking you on Facebook right now. I'm vicariously taking part in your races, your parades, your frustrations, your vacations, your deep thoughts, your family milestones. Is that scary? Ah, that's what social media is all about. You post it, tag it, share it, like it, and you're permitting your friends to view a bit of your world. Thank you! Thank you for being a friend, in real life or in the social media/arms length away world. Thank you for sharing!
This morning, I was checking out the donations made to the MS150 ride that my husband, sister, and 2 very dear friends are training for, which will take place next month. The bike ride is called the "BP MS150" because they will ride over 150 miles from Houston to Austin, in 2 days, to help raise awareness and monies for the fight against Multiple Sclerosis. What an amazing adventure! What an awesome journey, both physically and emotionally! What a crazy thing to do!!! I don't care to drive 150 miles, let a lone pedal that on a bike?! My guess is that they don't either, but this is exactly what they will be doing. Why? Because they care. Because they want to share their world with others. Because they choose to help make a difference. They are riding because they can! What a motivation!!
Today the sun is shining, the birds are chirping, the air is cool, the coffee taste good, and the heart is full. Today is a day that I choose to look up at the world, rather than at my feet, while I walk. Today, I release fears that sit quietly inside my head, as they are not mine to control. Today, I choose to smile rather than sit emotionless. Today, I remember to thank God for the air in my lungs. Today, I choose to share and celebrate life, because I can. Thanks for sharing yours too!
This morning, I was checking out the donations made to the MS150 ride that my husband, sister, and 2 very dear friends are training for, which will take place next month. The bike ride is called the "BP MS150" because they will ride over 150 miles from Houston to Austin, in 2 days, to help raise awareness and monies for the fight against Multiple Sclerosis. What an amazing adventure! What an awesome journey, both physically and emotionally! What a crazy thing to do!!! I don't care to drive 150 miles, let a lone pedal that on a bike?! My guess is that they don't either, but this is exactly what they will be doing. Why? Because they care. Because they want to share their world with others. Because they choose to help make a difference. They are riding because they can! What a motivation!!
Today the sun is shining, the birds are chirping, the air is cool, the coffee taste good, and the heart is full. Today is a day that I choose to look up at the world, rather than at my feet, while I walk. Today, I release fears that sit quietly inside my head, as they are not mine to control. Today, I choose to smile rather than sit emotionless. Today, I remember to thank God for the air in my lungs. Today, I choose to share and celebrate life, because I can. Thanks for sharing yours too!
Tuesday, March 13, 2012
Buh-Bye
Last Wednesday, I parted ways with a dear acquaintance. We'd known each other for quite sometime, and had been through 'some stuff' together. However, like many relationships, it was time for this one to end. Each party has to support the other, and where I was well supported, in turn, I did not reciprocate and was neglectful.
I really did want to maintain what we had, but failed to truly do my part. Yes, I could have done more and probably should have, yet knowing our deep connection was soon to be broken, the distance I created was more intentional, than not. Likely it was denial, and I was protecting myself from the anxiety about going our separate ways.
Catheter #5...I thank you for being such a key part of my life, much as those before you. In my mind, you and I parted on very good terms, and it truly is with mixed emotion, that I say "buh-bye"
Yep, alls still good here! Its been 3 months since the last pheresis. Amen!
I really did want to maintain what we had, but failed to truly do my part. Yes, I could have done more and probably should have, yet knowing our deep connection was soon to be broken, the distance I created was more intentional, than not. Likely it was denial, and I was protecting myself from the anxiety about going our separate ways.
Catheter #5...I thank you for being such a key part of my life, much as those before you. In my mind, you and I parted on very good terms, and it truly is with mixed emotion, that I say "buh-bye"
Yep, alls still good here! Its been 3 months since the last pheresis. Amen!
Tuesday, February 21, 2012
Straight Talk - Prednisone
Today, I could feel my face!! For the first time in a while, I woke up able to feel my face again. Not in the sense that you put your hand to your face, and it feels smooth, or bumpy, or cold, or smiley. Feel my face in the sense that it did not feel numb-ish from the inside. I could smile and feel my cheeks and the muscles that help make that happen. It didn't feel like a Dentist loaded me up with that lovely 'stuff' that dulls the hurt. I could feel my face! Now, as I type, its late in the day, and the sensation has diminished. Baby steps!
We continue to slowly decrease the Prednisone and with that, I suppose the side effects will slowly go away too. All I've heard people say is that the side effects from this medication (long term use), is 'just horrible'. Then I ask, 'what does that mean' and often do not get a clear answer. So, I'm here to share.
Your joints start to hurt. I brace myself at times, when sitting. No, you re not getting old and falling apart..well..not exactly. You're not expediting the aging process, but your body *is* expediting the joint degradation. Gotta keep exercising!
My appetite is great..and so is my waistline. NO, that's not a cry for help or a woe is me. Its more like a 'Whoooah' for me!
My vision gets blurry. Aside from any allergens that may be blowing through the area, the vision field gets blurry at times and you have to stop and blink, blink, blink or I even try the eye drops. Sometimes it helps, but most of the time, ya just deal with the change.
Your skin gets a bit aggravated too. What does that mean? I mean, there are little bumps all over that you would liken to dry skin or maybe hives or shingles...it looks that way. I have a lovely break out on my face, and it acts nothing like the silly 'zits' we all grew up with. They're just annoying and ugly.
Ok, that's my quick tutorial on the side effects of Prednisone. Those that I have experienced! Don't get me wrong, these are necessary hurdles and very minimal, when compared to the alternatives patients are often faced with.
Today marks 10-weeks with out pheresis, 11-weeks since the last infusion, let's call it 12-weeks since the symptoms were present, and this morning I could feel my face!
We continue to slowly decrease the Prednisone and with that, I suppose the side effects will slowly go away too. All I've heard people say is that the side effects from this medication (long term use), is 'just horrible'. Then I ask, 'what does that mean' and often do not get a clear answer. So, I'm here to share.
Your joints start to hurt. I brace myself at times, when sitting. No, you re not getting old and falling apart..well..not exactly. You're not expediting the aging process, but your body *is* expediting the joint degradation. Gotta keep exercising!
My appetite is great..and so is my waistline. NO, that's not a cry for help or a woe is me. Its more like a 'Whoooah' for me!
My vision gets blurry. Aside from any allergens that may be blowing through the area, the vision field gets blurry at times and you have to stop and blink, blink, blink or I even try the eye drops. Sometimes it helps, but most of the time, ya just deal with the change.
Your skin gets a bit aggravated too. What does that mean? I mean, there are little bumps all over that you would liken to dry skin or maybe hives or shingles...it looks that way. I have a lovely break out on my face, and it acts nothing like the silly 'zits' we all grew up with. They're just annoying and ugly.
Ok, that's my quick tutorial on the side effects of Prednisone. Those that I have experienced! Don't get me wrong, these are necessary hurdles and very minimal, when compared to the alternatives patients are often faced with.
Today marks 10-weeks with out pheresis, 11-weeks since the last infusion, let's call it 12-weeks since the symptoms were present, and this morning I could feel my face!
Sunday, February 12, 2012
Its 8.5 for Team Higgins
It would seem that I need to begin using the voice memo recorder on my phone, as I have these 'brilliant' ideas during the week, that I intend to share with you, fully trusting myself that I will not forget the topic this time , and when time is allotted to sit down and chat with you, well, I've forgotten of course.
This has been a good week. It is now 8.5 weeks since the last pheresis treatment, and 9.5 weeks since the last infusion, and I'll be bold and say 10.5 weeks since the last symptoms were noticeable. Good numbers! We continue to decrease the Prednisone and look forward to that wrapping up in a couple of months. So all in all, I'm doing great!
Comparing where we have been, and where we are now, I am a *very* happy camper. It feels like we've reach a plateau. What a climb, and what do we do now? I promise it wont be sit still and wait. No more waiting to see what MG or MS will serve up next. Our MG support group is taking part in the MDA's annual fundraising celebration in 2 weeks (Muscle Walk), Lee is training to ride in the MS 150 coming up in April (150 miles, Houston to Austin, 2-days!), and just after this, we'll travel to Las Vegas to take part in the annual Myasthenia Gravis Foundation of America conference. We keep busy!
We rest too, and we give thanks for the blessings we've received through all of this poo. The list o blessings is long, and ever growing. For example, I'm blessed to have just watched that big ole sun rise again, and that 8.5 is more than just my shoe size!
This has been a good week. It is now 8.5 weeks since the last pheresis treatment, and 9.5 weeks since the last infusion, and I'll be bold and say 10.5 weeks since the last symptoms were noticeable. Good numbers! We continue to decrease the Prednisone and look forward to that wrapping up in a couple of months. So all in all, I'm doing great!
Comparing where we have been, and where we are now, I am a *very* happy camper. It feels like we've reach a plateau. What a climb, and what do we do now? I promise it wont be sit still and wait. No more waiting to see what MG or MS will serve up next. Our MG support group is taking part in the MDA's annual fundraising celebration in 2 weeks (Muscle Walk), Lee is training to ride in the MS 150 coming up in April (150 miles, Houston to Austin, 2-days!), and just after this, we'll travel to Las Vegas to take part in the annual Myasthenia Gravis Foundation of America conference. We keep busy!
We rest too, and we give thanks for the blessings we've received through all of this poo. The list o blessings is long, and ever growing. For example, I'm blessed to have just watched that big ole sun rise again, and that 8.5 is more than just my shoe size!
Sunday, January 29, 2012
Week 7
Yes, it HAS been a while! Happy New Year!!! I really did/do intend on posting more often, but then I simply let time get by me. Honestly, its when I hear from you, that I'm motivated blog a bit.
Life is really, really good! I remain symptom free, and I'm not afraid to say that out loud. Tuesday will be 7 whole weeks, since my last pheresis treatment. Seven!! I've not been this long without a symptom, since the joy-ride began in November of 2008. Wahoooooo.... How long will it last, and what will we do when the symptoms return? We're not 100% sure, but I AM tired of sitting around and waiting on the next something to happen...no ma'am, done with that!
For now, the catheter remains in my chest. We are slowly bringing me off the Prednisone, and this should last for another 10 weeks. At about the same time, we anticipate the benefits from the initial Rituxan therapy to begin wearing off as well. We're keeping #5 around as a back up plan! Ya just never now when you may need a trusty ole tube to be hanging out of your chest. :)
Lee and I are blessed, and we know it! This year has started off very well, and we have lots to do in the new year. God willing, we'll keep MG and MS in the back of the car for our journey trough 2012.
Life is really, really good! I remain symptom free, and I'm not afraid to say that out loud. Tuesday will be 7 whole weeks, since my last pheresis treatment. Seven!! I've not been this long without a symptom, since the joy-ride began in November of 2008. Wahoooooo.... How long will it last, and what will we do when the symptoms return? We're not 100% sure, but I AM tired of sitting around and waiting on the next something to happen...no ma'am, done with that!
For now, the catheter remains in my chest. We are slowly bringing me off the Prednisone, and this should last for another 10 weeks. At about the same time, we anticipate the benefits from the initial Rituxan therapy to begin wearing off as well. We're keeping #5 around as a back up plan! Ya just never now when you may need a trusty ole tube to be hanging out of your chest. :)
Lee and I are blessed, and we know it! This year has started off very well, and we have lots to do in the new year. God willing, we'll keep MG and MS in the back of the car for our journey trough 2012.
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