Well hey there! (in my best southern accent) It has been a while!!
How has your new year started? Have you made an effort to savor the good and forgive the bad? I have!! My goal was to begin counting the good days, and quit focusing on my bad days. Today is day 38 or so, and its a good day! That's right, day 38 of minimal symptoms! ..and now I am knocking on wood and wincing since I've typed this out loud. Day 38.
Every night when Lee and I prepare my injection of the MS drug, I have a journal where any symptoms or issues are logged. Originally this would start off with "5 to L thigh", meaning the injection setting was at 5 and that we injected into my L thigh. You rotate 7 injection sites, and therefore track your activity....anywho...rather that starting each journal entry with the obligatory needle depth and site, I start now with "Day 38". Different perspective!! Rather than focus on the icky part of the experience, I choose to see the good.
I've taken a week to finish this blog entry. Began this on Day 33....I'm not sure why I've procrastinated, but I'm sure its because of laziness or fear. Afraid that when I say "I feel good" that it tilts the ride the other way. My prayer has been, and continues to be, "Lord, I want to show up to my wedding standing strong and seeing straight". Three weeks to go! I'm ready for day 53!!
My Myasthenia is still very present, and I can feel the symptoms when I'm tired. It's just enough to keep me sober to the fact that I must make time for rest. Plasmapheresis treatments continue taking place 3x per week. We wont tinker with this again, until after the wedding, when we will likely start a new treatment plan as well.
Thanks for checking in and asking how things are. Things are GREAT!! I have no complaints and am doing my best to enjoy each day for the joy that it is. Day 38..its a good day.
Monday, January 24, 2011
Wednesday, December 22, 2010
Be Blessed
Day 1, stable vision. I think its important to count the good days too! Today is the first day in a long while, that I've felt more like myself. The right blood levels are climbing, so I have more energy; Eyes are calm and seeing clearly, so I feel less confused and more balanced; Mouth and speech are normal, so I'm more inclined to eat (and talk...I'll say it); the plasma pheresis treatments are going well, so I'm not getting physically sick after each one. Day 1! Its too easy to count the negatives, and I have been lately. I've been mad and very upset about where I am, and doing the 'why me' thing. That's ok, and I know that's ok and healthy to acknowledge those feelings, but its best not to dwell. So I wont...
Myasthenia gravis moves in waves, or patients experience flares. Sometimes medicines and treatments quiet these flares, other times they can't. For me, the symptoms range from double vision, weak speech and swallow, to weakened neck, shoulder & leg muscles. My treatment/medicine is truly the plasma pheresis.
In looking back over my attempt at blogging this past year, I reflect on my original goal. First, to help me avoid dwelling on my 'condition', I wanted communicate as much as I can about Myasthenia Gravis; to make the world aware this disease is around, to share the experience, the symptoms, the emotions, the frustrations and the successes that can come with MG. Second, to actually document my reality and make communication simpler to share with family and friends. Third, to clearly explain the divine source of my strength and energy, which is so necessary to get through all of this crap! :-D (Don't worry, He's heard me say much worse). Its been a long, trying year and we hear that after 2 years of MG, the symptoms tend to stabilize. We're still waiting... and while we wait, we appreciate. You should do the same.
Before your body slows you down, make a point to slow down this holiday season. Don't get lost in the speed of the commercial holiday season. Be present! Savor each moment you have with your family and friends. Look each person in the eye while you're speaking. Looks past their eyes and into their soul. When you exchange greetings with anyone, be sincere. If you can't be sincere, be quiet and smile. Most of all, let yourself feel the blessing of life. Regardless of what your faith is, what you believe in, or what you call it, feel the blessing of having life, of having loved ones around you, of having the amazing gifts that you do, and that you're here right now experiencing another day. We are so small and yet so wildly empowered. Don't miss that.
Day 1. Today was a good day.
Thank you all for your awesome love and support this year, sincerely!
You are a blessing to me!
Myasthenia gravis moves in waves, or patients experience flares. Sometimes medicines and treatments quiet these flares, other times they can't. For me, the symptoms range from double vision, weak speech and swallow, to weakened neck, shoulder & leg muscles. My treatment/medicine is truly the plasma pheresis.
In looking back over my attempt at blogging this past year, I reflect on my original goal. First, to help me avoid dwelling on my 'condition', I wanted communicate as much as I can about Myasthenia Gravis; to make the world aware this disease is around, to share the experience, the symptoms, the emotions, the frustrations and the successes that can come with MG. Second, to actually document my reality and make communication simpler to share with family and friends. Third, to clearly explain the divine source of my strength and energy, which is so necessary to get through all of this crap! :-D (Don't worry, He's heard me say much worse). Its been a long, trying year and we hear that after 2 years of MG, the symptoms tend to stabilize. We're still waiting... and while we wait, we appreciate. You should do the same.
Before your body slows you down, make a point to slow down this holiday season. Don't get lost in the speed of the commercial holiday season. Be present! Savor each moment you have with your family and friends. Look each person in the eye while you're speaking. Looks past their eyes and into their soul. When you exchange greetings with anyone, be sincere. If you can't be sincere, be quiet and smile. Most of all, let yourself feel the blessing of life. Regardless of what your faith is, what you believe in, or what you call it, feel the blessing of having life, of having loved ones around you, of having the amazing gifts that you do, and that you're here right now experiencing another day. We are so small and yet so wildly empowered. Don't miss that.
Day 1. Today was a good day.
Thank you all for your awesome love and support this year, sincerely!
You are a blessing to me!
Wednesday, December 15, 2010
Get your motor running
It has been a wild and crazy couple of weeks. After Thanksgiving, we took a short trip to GA for an early Christmas visit, and to celebrate Mom's birthday. Great time in chilly GA, seeing family and friends. We were also able to join Mom and Dad in their Sunday School class, while there. You walk into the room, and have the feeling come over you that God's business is being done. What a powerful group of prayer warriors! We had turkey and dressing for several days too...yumtastic. After shopping and resting and eating and resting, it was time to head back to TX. Double vision and all. Yeppers, that dang Myasthenia made the trip with us. Seems my body is not able to vacation away from the pheresis schedule.
Since mid-November, I've been dealing with a persistent pain in my back and ribs. It moves from front to back or side to side, but in large part it was all over. Originally, we thought this must be related to MS. Since this is a new disease for us to learn about, it only seems logical to blame it for any new symptoms. Wrong.
While shopping in GA, we ran into one of my dearest friends from home and she shared struggles her family was dealing with, regarding a different auto-immune disease. Some of their symptoms sounded like mine, and this prompted me to call our Pulmonologist in Austin and schedule an appointment upon our return. Good thing..after the Dr. visit on Thursday and a CT scan of my lungs/chest, and a different scan on Friday morning after pheresis, I was admitted to the hospital for blood clots in my lungs. Wha?!?! Really? Are you KIDDING me? I do my best to keep a smile on my face, but this time I was mad.
Evidently my lugs have had blood clots for a few months, causing the pains/breathing issues I've had since August. Some of that was MG I'm sure, but you don't know what you don't know, ya know? I didn't know the symptoms of Pulmonary Embolism.
So, as of late, we're treating the MG with pheresis and drugs, the MS with drugs, and now the PE with blood thinners..more drugs. Have I mentioned I dont care for drugs? This is frustrating!
Poor Lee, he's held me a couple of times this past week as I just cried out of being exhausted and mad. After I vent it out a little, I'm better. We just keep reminding each other that this is ours for a reason, although we may not understand it. If you've learned with us, a little bit about a disease called Myasthenia Gravis, then we've done good! If you've learned with us, that auto-immune diseases tend to show up in multiples, then we're doing really well! If you learned with us, that you can ride any of these waves if you let God power your boat, then you're helping make this journey worth the while. Make sure you're boat has a Hemi in it!
Since mid-November, I've been dealing with a persistent pain in my back and ribs. It moves from front to back or side to side, but in large part it was all over. Originally, we thought this must be related to MS. Since this is a new disease for us to learn about, it only seems logical to blame it for any new symptoms. Wrong.
While shopping in GA, we ran into one of my dearest friends from home and she shared struggles her family was dealing with, regarding a different auto-immune disease. Some of their symptoms sounded like mine, and this prompted me to call our Pulmonologist in Austin and schedule an appointment upon our return. Good thing..after the Dr. visit on Thursday and a CT scan of my lungs/chest, and a different scan on Friday morning after pheresis, I was admitted to the hospital for blood clots in my lungs. Wha?!?! Really? Are you KIDDING me? I do my best to keep a smile on my face, but this time I was mad.
Evidently my lugs have had blood clots for a few months, causing the pains/breathing issues I've had since August. Some of that was MG I'm sure, but you don't know what you don't know, ya know? I didn't know the symptoms of Pulmonary Embolism.
So, as of late, we're treating the MG with pheresis and drugs, the MS with drugs, and now the PE with blood thinners..more drugs. Have I mentioned I dont care for drugs? This is frustrating!
Poor Lee, he's held me a couple of times this past week as I just cried out of being exhausted and mad. After I vent it out a little, I'm better. We just keep reminding each other that this is ours for a reason, although we may not understand it. If you've learned with us, a little bit about a disease called Myasthenia Gravis, then we've done good! If you've learned with us, that auto-immune diseases tend to show up in multiples, then we're doing really well! If you learned with us, that you can ride any of these waves if you let God power your boat, then you're helping make this journey worth the while. Make sure you're boat has a Hemi in it!
Wednesday, November 24, 2010
Shining my light..because I can!
Two years ago, my first symptom appeared. Woke up, unable to spit toothpaste out. Later that day, I began to slur speech and have a nasty neck pain. Who knew that we would step into the world of Myastenia Gravis.
Today, I am thankful that we have 'this' neuromuscular, auto-immune disease, rather than some of the others which are so much more destructive. I am thankful that God has blessed me with the love and support of my fiance, family, and friends, without whom, I'm pretty sure my endurance would have crumbled a long time ago. I am thankful God has blessed me with a feisty spirit that doesn't want to give up or be sad for long. I am thankful that He is using me, to shine through. "This little light of mine, I'm gonna let it shine"
That concept really hit me this past Sunday morning, while enjoying the wind that was blowing. The leaves in the trees are colorful and crispy, so the wind created a sound I likened to applauding, and then decided the leaves were applauding the new day! How awesome. This gave me perspective on the wind too, in realizing how much it played a part in the experience. Without the wind, I wouldn't have taken notice of the leaves, which in turn made me appreciate the wind even more. So, the way I see it, God is always around us and sometimes it takes a crispy leaf like me with MG, to help people notice him in a new way.
So, with Thanksgiving here, I celebrate us! All that we've been through, yes - you're part of this too, and the amazing opportunity we all have to help shine a little light on Him.
God bless this food...let's eat.
Today, I am thankful that we have 'this' neuromuscular, auto-immune disease, rather than some of the others which are so much more destructive. I am thankful that God has blessed me with the love and support of my fiance, family, and friends, without whom, I'm pretty sure my endurance would have crumbled a long time ago. I am thankful God has blessed me with a feisty spirit that doesn't want to give up or be sad for long. I am thankful that He is using me, to shine through. "This little light of mine, I'm gonna let it shine"
That concept really hit me this past Sunday morning, while enjoying the wind that was blowing. The leaves in the trees are colorful and crispy, so the wind created a sound I likened to applauding, and then decided the leaves were applauding the new day! How awesome. This gave me perspective on the wind too, in realizing how much it played a part in the experience. Without the wind, I wouldn't have taken notice of the leaves, which in turn made me appreciate the wind even more. So, the way I see it, God is always around us and sometimes it takes a crispy leaf like me with MG, to help people notice him in a new way.
So, with Thanksgiving here, I celebrate us! All that we've been through, yes - you're part of this too, and the amazing opportunity we all have to help shine a little light on Him.
God bless this food...let's eat.
Thursday, November 11, 2010
Ug already.
Ok, UG! Guess what I'm wearing today? Tape. Yep...back to the tape. It's not horrible, but ug. I'm still chewing and speaking well enough, but its all slowing down. Now I'm just whining...my back hurts from neck to tail end. This could be MS related or just super intense cramping..which I don't typically experience. Who knows.... I'm just praying that God takes the stinking double vision away and that treatment tomorrow will do the trick. Otherwise, we'll go back to 3 next week. Did I mention Ug? UUUUGGGG! ...but it could be so much worse, and we've come so far...
Subscribe to:
Posts (Atom)
