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.
Wednesday, November 24, 2010
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...
Wednesday, November 10, 2010
Resting through it
Well, we've been roughly a month and a half without tape on the glasses. How awesome! ..and this is the second week, that we're trying only 2 pheresis treatments, rather than 3 a week. For the most part, I feel like we're getting by...but...
My back has been fighting me for the past few days, with tightness and spasms. This week is also the week that my body is under natural stress. (Was that dainty?) With all of this, I can feel my swallow becoming more difficult and my eyes want to fight too. Ug. This is what we've expected, and I consider this week my test. If we can survive the week without double vision, and can continue to rest the symptoms away, then we're really making progress!
We'll head back to Dallas for a follow up with the MuSK MG Dr. in a couple of weeks, and expect that we'll increase the dosage again, which i think will help more. My hope/goal...we make it to 1 treatment per week, by year's end.
Time to rest the eyeballs...
My back has been fighting me for the past few days, with tightness and spasms. This week is also the week that my body is under natural stress. (Was that dainty?) With all of this, I can feel my swallow becoming more difficult and my eyes want to fight too. Ug. This is what we've expected, and I consider this week my test. If we can survive the week without double vision, and can continue to rest the symptoms away, then we're really making progress!
We'll head back to Dallas for a follow up with the MuSK MG Dr. in a couple of weeks, and expect that we'll increase the dosage again, which i think will help more. My hope/goal...we make it to 1 treatment per week, by year's end.
Time to rest the eyeballs...
Tuesday, November 2, 2010
Keep on, keeping on!
Hey their neighbors! I feel ashamed that my blogginess has slowed, while things have been better. However knowing many of you, if not hearing from me means we're on a good path, then we're all ok with this.
Things are still going well, no complaints! My symptoms are very minimal compared to where we've been. Each night, my mouth slows down, and I'm starting to take this as a divine sign...to hush. :) My vision has been stable, my fatigue minimal, and most everything dissipates with sleep/rest. This is manageable!! I've begun to say it out loud, that the increase in dosage of Prograf, has really made a difference. We visit the Dallas Neuro in a few weeks, and our Austin Neuro indicates that another increase in dosage is expected. We'll see.
I am experimenting with pheresis treatments this month. Because I am strong, and because the stability has lasted more than a month, I'm ready to see what happens when we try 2 treatments this week. We'll do 3 next week, and 2 the week following. The only way to see if the medicine is really making a difference, is to start weening myself away from plasmapheresis. Wow, wouldn't THAT be a blessing??? In the mean time, we just keep on, keeping on!
The MS seems to be fine, although its still not super clear to me what I should be looking for. Aside from some funky vision stuff, which the Neuro says sound more like migraines than the initial MS symptom, all has been quiet. We maintain our daily injection routine. Ug. ..but it could be worse. It has been worse.
So many of you are dealing with great health hurdles this month, and I lift you up in prayer, as you have done for me. Without naming you all, know that you are my prayer list, which is taped to my laptop. Rather use tape for something good like that, than on my glasses. :)
Love you all
Rach
Things are still going well, no complaints! My symptoms are very minimal compared to where we've been. Each night, my mouth slows down, and I'm starting to take this as a divine sign...to hush. :) My vision has been stable, my fatigue minimal, and most everything dissipates with sleep/rest. This is manageable!! I've begun to say it out loud, that the increase in dosage of Prograf, has really made a difference. We visit the Dallas Neuro in a few weeks, and our Austin Neuro indicates that another increase in dosage is expected. We'll see.
I am experimenting with pheresis treatments this month. Because I am strong, and because the stability has lasted more than a month, I'm ready to see what happens when we try 2 treatments this week. We'll do 3 next week, and 2 the week following. The only way to see if the medicine is really making a difference, is to start weening myself away from plasmapheresis. Wow, wouldn't THAT be a blessing??? In the mean time, we just keep on, keeping on!
The MS seems to be fine, although its still not super clear to me what I should be looking for. Aside from some funky vision stuff, which the Neuro says sound more like migraines than the initial MS symptom, all has been quiet. We maintain our daily injection routine. Ug. ..but it could be worse. It has been worse.
So many of you are dealing with great health hurdles this month, and I lift you up in prayer, as you have done for me. Without naming you all, know that you are my prayer list, which is taped to my laptop. Rather use tape for something good like that, than on my glasses. :)
Love you all
Rach
Sunday, October 24, 2010
Spinning and Reflecting
Sitting in spin class, gearing up for this week. What a week it will be!
This weekend we were in the Houston area. Saturday we took part in the first annual Myasthenia Gravis conference in Houston, at the Methodist Hospital. This is the same hospital we visited early in the diagnosis process, when ruling out ALS. This is also where we came to know Dr. Appel, who is a fixture in the neurology world. The conference was great, and very well attended, so much so, there will be a second annual event, and a larger facility will be reserved next year! AWESOME!! The more we collect as a group of MGers and Caregivers, the louder our voice will be. Then, on Sunday, we celebrated Lee's Grandaddy. Tuesday is his 90th birthday! What an awesome milestone to be able to share in, and with all of the family, and Grandaddy looked great!
I'm feeling very well! I'm hopeful we are noticing the benefits of Prograf. It has been a month since I pulled the tape off my glasses, and aside from weak speech and swallow later in the day, you would hardly know anything was going on. One month without double vision...wow...and this has been a busy month! November will slow down and I think we'll tinker with the pheresis schedule then. Maybe...just maybe I can step down to 2x a week, rather than 3x....who knows, we'll see.
Daily injections continue, and we're in the swing of it all now. Will check in with MS nurse to confirm we're doing everything correctly, but it seems to be minimal work; just an aggravation.
Thank you God for bringing us to this point of rest, of less physical stress, and fewer surprises. May we find comfort in this time and be recharged and ready for anything that may come our way next. Many of you are dealing with your own health issues, and will be managing surgeries in November. You are in my prayers too!
Thank you friends and family for reading along in our journeys. If nothing else, I've learned thus far that we are meant to share our lives with others, and to learn from each other. You've taught me a great deal...and I thank you for this.
This weekend we were in the Houston area. Saturday we took part in the first annual Myasthenia Gravis conference in Houston, at the Methodist Hospital. This is the same hospital we visited early in the diagnosis process, when ruling out ALS. This is also where we came to know Dr. Appel, who is a fixture in the neurology world. The conference was great, and very well attended, so much so, there will be a second annual event, and a larger facility will be reserved next year! AWESOME!! The more we collect as a group of MGers and Caregivers, the louder our voice will be. Then, on Sunday, we celebrated Lee's Grandaddy. Tuesday is his 90th birthday! What an awesome milestone to be able to share in, and with all of the family, and Grandaddy looked great!
I'm feeling very well! I'm hopeful we are noticing the benefits of Prograf. It has been a month since I pulled the tape off my glasses, and aside from weak speech and swallow later in the day, you would hardly know anything was going on. One month without double vision...wow...and this has been a busy month! November will slow down and I think we'll tinker with the pheresis schedule then. Maybe...just maybe I can step down to 2x a week, rather than 3x....who knows, we'll see.
Daily injections continue, and we're in the swing of it all now. Will check in with MS nurse to confirm we're doing everything correctly, but it seems to be minimal work; just an aggravation.
Thank you God for bringing us to this point of rest, of less physical stress, and fewer surprises. May we find comfort in this time and be recharged and ready for anything that may come our way next. Many of you are dealing with your own health issues, and will be managing surgeries in November. You are in my prayers too!
Thank you friends and family for reading along in our journeys. If nothing else, I've learned thus far that we are meant to share our lives with others, and to learn from each other. You've taught me a great deal...and I thank you for this.
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