I don't have much to say today (shocked?), but I clicked on the blog b/c I'm trying to write when things are GOOD too!
Today is GOOD! I'm feeling close to normal, and eating like a horse..well, a horse that likes meat, and cheese, and sweets. I'm not a huge sweets fan, but this morning, I was craving a McDonalds Bacon, Egg, Cheese biscuit. Their biscuits are just too big though..too much bread. Crawling out of my tunnel vision at the order board, I tried the McGriddle, which surprised me! I honestly thought I was ordering the BEC on an English Muffin..nope, it turned out to be a small pancake, with syrup cooked in somewhere. I don't want to know how it was made, how horrible it is, or where it came from 30 mins before I ordered...All I know is that it hit the spot, and was good!
We (Lee and I) are working on picking a date and location for wedding madness. That's fun! Soon we'll get to do the more fun stuff...like sample food...;)
I suppose today I'd like to share how grateful I am for your constant prayers, and to those who have shared your prayer request with me! It is SUCH and honor to be able to pray with you. One of my girlfriends today asked for prayer, so we prayed via email. A friend did this for me once, and I hold his email as treasure, till this day. Pray it forward!
Have a wonderful Thursday, and make sure you find time to rest!
Amen
Thursday, April 22, 2010
Friday, April 16, 2010
Pray the cars away
We've been back in the US for 8 days or so...and it has been a fun week!! We returned from Paris engaged (awesome), and dealing with lots O symptoms (expected). This time around the double vision locked on right away, followed with the regular swallowing problems, then breathing and muscle weakness issues. I've had 5 treatments in the past 8 days, and am almost back to normal. Just walking slow.
This past week, while driving with the double vision (yes, should be a no-no), I realized how powerful prayers are. Not only your prayers, but mine too! The good Lord knows that I'm hard headed, and wont sit still for a week in my apartment, waiting on the double vision to blow over. Nor will I allow others to be taxed with shuttling me around all the time. For the record, Lee does drive me most of the time, when I'm dealing with the vision. ANYWAY! ...when I do get behind the wheel, with tape on my glasses (this helps me focus on using one eye), I say a quick prayer, "Lord, please protect me and all the cars around me. Amen" When my head and heart are lined up and being sincere with this prayer, I tell ya what, the cars are all gone. I can pray the cars away! hehehe
When its time to merge into traffic with one eye closed, the cars are held up at the red light, up the hill. When I need to get off the hwy and merge onto a service street, the cars have opened up nicely. Pray the cars away! Its kinda fun. Can't imagine what Moses felt like, praying the water away.
Anyway, that's been in my head this past week. Praying the cars away, and how powerful prayer really can be. We'll see what goofy saying I have for next week's enjoyment.
This past week, while driving with the double vision (yes, should be a no-no), I realized how powerful prayers are. Not only your prayers, but mine too! The good Lord knows that I'm hard headed, and wont sit still for a week in my apartment, waiting on the double vision to blow over. Nor will I allow others to be taxed with shuttling me around all the time. For the record, Lee does drive me most of the time, when I'm dealing with the vision. ANYWAY! ...when I do get behind the wheel, with tape on my glasses (this helps me focus on using one eye), I say a quick prayer, "Lord, please protect me and all the cars around me. Amen" When my head and heart are lined up and being sincere with this prayer, I tell ya what, the cars are all gone. I can pray the cars away! hehehe
When its time to merge into traffic with one eye closed, the cars are held up at the red light, up the hill. When I need to get off the hwy and merge onto a service street, the cars have opened up nicely. Pray the cars away! Its kinda fun. Can't imagine what Moses felt like, praying the water away.
Anyway, that's been in my head this past week. Praying the cars away, and how powerful prayer really can be. We'll see what goofy saying I have for next week's enjoyment.
Thursday, April 8, 2010
What a week!
Wow, what a week in Paris!! I'm typing to you from the 'blood chair' as I like to call the pheresis chair. We just returned from a week in Paris (yes, France), and saw just about everything! Thank you for soooo many prayers and well wishes. I fully know and trust that our good Lord helped keep the MG symptoms away, for as long as they stayed away. If you've shared my prayer request with others, please also share my humble, humble thank you!!!
We arrived on Friday early, and was symptom free until late Monday. Awesome! Today, back in TX, I'm fully engulfed by MG, but it has all been worth it! Lee and I walked soooo much in Paris, and he even asked me to marry him. (YAY!) With all of this exercise and excitement, the symptoms were expected far sooner. I'm blessed to have so many prayer warriors around me, lifting us up!
Today, I see double, can't swallow well, or speak much. So, I'm a bit frustrated of course. No matter though, I'm joyful on the inside, and know treatments today, tomorrow, and next week, will clear everything up. Thank you God for the beauty of modern medicine, and your brilliant children who I trust every week to make my body work. Aaaamen!
http://sharingbecauseican.blogspot.com/
We arrived on Friday early, and was symptom free until late Monday. Awesome! Today, back in TX, I'm fully engulfed by MG, but it has all been worth it! Lee and I walked soooo much in Paris, and he even asked me to marry him. (YAY!) With all of this exercise and excitement, the symptoms were expected far sooner. I'm blessed to have so many prayer warriors around me, lifting us up!
Today, I see double, can't swallow well, or speak much. So, I'm a bit frustrated of course. No matter though, I'm joyful on the inside, and know treatments today, tomorrow, and next week, will clear everything up. Thank you God for the beauty of modern medicine, and your brilliant children who I trust every week to make my body work. Aaaamen!
http://sharingbecauseican.blogspot.com/
Wednesday, March 31, 2010
Answered prayers
It has been a rough month, but the past few days have truly felt so nice! With 3 treatments per week, over the past 2 weeks, we've caught up to the symptoms again. My vision is stable and face is near 100%. What a blessing! After my last post and reaching out for prayers, its awesome how His grace just washed right over me and gave me calm. Hearing from folks who either read this or received an email about this blog, seriously lifted me up. Letting go of the stress about the disease, allowed my body to relax and fight the good fight! I'm eating like a horse again, and trying to put a few pounds back on. Yep, I just typed that ladies. :)
Thank you all for your prayers and continued support. Please let me know how I can also lift you up! Email/call/post...just let me know.
merci!
Rachel
Feeling good, and now, against all medical advice, Lee and I are taking off to Paris, France tomorrow, to visit with his brother and sister-in-law. We've been planning this trip for a while, and are very excited to take a vacation! The timing of course isn't the best, but when will it ever be? I accept these symptoms will begin flaring up during the trip, and so we'll plan to attack again, next week, when we return. Please pray for safe travels and minimal symptoms. By anticipating them, I'm releasing my stress over controlling the symptoms. I'll out-smart myself yet!
Thank you all for your prayers and continued support. Please let me know how I can also lift you up! Email/call/post...just let me know.
merci!
Rachel
Thursday, March 18, 2010
One month later
Maybe these symptoms are somehow hormonal. Who knows! As much as I love to test, retest, and test again..removing variables as best I know how, this human lab rat is rather tired of the game call MG. Yes, I'm sharing my frustrations because they are real, and it is healthy to share emotions..all of them.
For the past 2 1/2 weeks, its been all symptoms, all the time. I had one day, maybe 2, where my body was asymptomatic. When the throat and mouth slow for more than a few days, the eyes decide to play along too...and not to be shown up, the eyes cross for a week. Ok, eyes win, and in the spirit of springing forward, the eyes are extending themselves beyond the expected 1 week window. (If you're new to my story, once the vision doubles, it remains so for one calendar week)
I've been going slow, not zipping around. I returned to two treatments a week, body wont maintain stretching the duration. I'm sleeping..well, not right now, but you understand. I'm frustrated.
Whats next...We are attempting to use FFP (Fresh Frozen Plasma) in my pheresis treatments now, because other pheresis patients (with MG and not) have experienced extended periods of time between treatments with FFP. The first attempt was this past Tuesday, the second will be tomorrow. I'm going to ask for 3 treatments next week...we'll see if thats possible.
Also exciting, we've been scheduled to see a Dr in Dallas, who has a great deal of focus on MG and runs trials. I want to be in his trial for a drug called Rituxan! There are several cases we've found (and by 'we' I mean my wonderful Lee), where MuSK positive MG patients (thats my type of MG), have experienced remissions periods through Rituxan treatment. This drug is not yet FDA approved for MG, but has been for other diseases. God willing, we WILL contribute to finding a cure for this very, very, very silly disease.
All of this said, I'm very frustrated to have symptoms last consistently over a 2+ week period. My wonderful friends from Denver are coming into town for the weekend, and bless them, they know whats going on, and just want to hang out. Stress lowered there, no need to be a hostess with the mostest. Lee and I are going to Paris (France, not TX) on 4/1, and I'd rather see one everything...not two.
So, if you're reading this, I think I'm going to ask you to add me to your prayer list. Its time to reach out and stir the pot again...Rachel is ready to see straight...now... I can't promise I'll act straight, but I'll do my best.
Humbly yours Lord.
Rachel
For the past 2 1/2 weeks, its been all symptoms, all the time. I had one day, maybe 2, where my body was asymptomatic. When the throat and mouth slow for more than a few days, the eyes decide to play along too...and not to be shown up, the eyes cross for a week. Ok, eyes win, and in the spirit of springing forward, the eyes are extending themselves beyond the expected 1 week window. (If you're new to my story, once the vision doubles, it remains so for one calendar week)
I've been going slow, not zipping around. I returned to two treatments a week, body wont maintain stretching the duration. I'm sleeping..well, not right now, but you understand. I'm frustrated.
Whats next...We are attempting to use FFP (Fresh Frozen Plasma) in my pheresis treatments now, because other pheresis patients (with MG and not) have experienced extended periods of time between treatments with FFP. The first attempt was this past Tuesday, the second will be tomorrow. I'm going to ask for 3 treatments next week...we'll see if thats possible.
Also exciting, we've been scheduled to see a Dr in Dallas, who has a great deal of focus on MG and runs trials. I want to be in his trial for a drug called Rituxan! There are several cases we've found (and by 'we' I mean my wonderful Lee), where MuSK positive MG patients (thats my type of MG), have experienced remissions periods through Rituxan treatment. This drug is not yet FDA approved for MG, but has been for other diseases. God willing, we WILL contribute to finding a cure for this very, very, very silly disease.
All of this said, I'm very frustrated to have symptoms last consistently over a 2+ week period. My wonderful friends from Denver are coming into town for the weekend, and bless them, they know whats going on, and just want to hang out. Stress lowered there, no need to be a hostess with the mostest. Lee and I are going to Paris (France, not TX) on 4/1, and I'd rather see one everything...not two.
So, if you're reading this, I think I'm going to ask you to add me to your prayer list. Its time to reach out and stir the pot again...Rachel is ready to see straight...now... I can't promise I'll act straight, but I'll do my best.
Humbly yours Lord.
Rachel
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