Today went very well, and thank you for all of your prayers!
Dr. Wolfe turns out to be a very sharp man, and focuses on MuSK MG! I've never been more excited to have someone tell me I'm a 'classic case.' Sounds fairly average in my book! Turns out, I'm one of 17 or so MuSK MG cases Dr. Wolfe has seen in TX. All are women, with onset in their early decades (20s/30s). Pretty cool, eh?
For those new to this craziness, Myastenia Gravis (MG) is a rather rare autoimmune disease, in which signals from nerves are interrupted, before reaching their intended muscles. These muscles are mainly located in the upper body, neck and head/face. MG affects 2-7 out of every 10,000 people in Western countries. It occurs about 1.5 times more often in women than in men. Of those effected, 15% have a variation of the disease related to an antibody that fights the muscle-specific kinase (MuSK) protein. How 'bout them apples?
We talked about my MG history, and what treatment options are actually available to me. We discussed steroids, an immunosuppressant (Prograf), Rituximab and pheresis. As much as Lee and I were excited to hear more about Rituximab, it turns out I'm really not in a good place to try this. It has a 2-3 month ramp up period, and you can't/shouldn't have pheresis while taking it. At present, there is no way I would last 2 weeks without pheresis, let alone 2 months. So, of the remaining options, we will be moving forward with the immunosuppressant and continued pheresis with hope this drug works on me. Dr. Wolfe shared they've used this with a few other MuSK(ies - my word :) ), and had success. The ramp up period ranges from 2-4 months. We'll see!!
What a blessing to meet one of the men behind so many MuSK MG studies today, and to have him understand exactly what's going on. Unsolicited, he commented pheresis treatment 3x week is no way to live. AAAAAAMEN!!
We'll be working with our neuro in Austin, Dr. Horvit, on next steps and getting started with this newer drug. We'll return to Dallas for a visit with Dr. Wolfe in 3 months. In the mean time, pheresis must continue. As of writing this, my speech/swallow is labored due to all the chatting I've done today (me, chatty?), and my eyes are crossing. This just makes the next week that much more exciting, right?
Lee has been a rockstar and my angel! I love him dearly and am so blessed to have him by my side! Did we mention we're getting married? Date TBD, but most likely early 2011.
Time to rest these crisscrossed eyes... G'night All..and may God richly bless you and protect you. May you let His love fill you up!
Rach
Thursday, April 29, 2010
Monday, April 26, 2010
return of the oooozzzzeeee
I woke up this morning, ready to take on the day (thanks Dr. Laura)! First things first, the shower to wake up. Today is a 'dressing change' day for me. I wash the catheter site and change the dressing, every other day. This morning, I removed the gauze to see green ooze. Dang the ooze!
Just like a science experiment, I carried my 'findings' into treatment this morning, and showed off the ooze. We dripped some antibiotic right after treatment, and then will start on pills too. This is the first siting of ooze, and I'm not scared of it...but I know to report it now, and not try and 'mentally fight it'.
Thursday is the day we meet with Dr. Wolfe in Dallas. He is another neurologist, but studies and test quite a bit, with Myasthenia Gravis. From what I'm told, I expect we will be in a one-on-one meeting with him, rather than sitting in a room full of residents like a show and tell exercise (let's leave that for the ooze). We meet with him at 8am, and do more electromagasomethingoranother that afternoon, as a 'standard' part of the visit. This is where they insert a short needle (sewing needle size) into various areas of my head and body, to measure signals from my nerves and muscles. Atleast it's not a spinal tap or feeding tube...this is tolerable.
So, prayers up! Praying hard over this catheter, that we do not become infected. Prayer super duper hard for Dr. Wolfe and trusting that the 'right' thing will come from this visit. I know what I want to come from it, but know better than to try and force that into reality.
We'll report in!
*muuuuuuuah*
Rach
Just like a science experiment, I carried my 'findings' into treatment this morning, and showed off the ooze. We dripped some antibiotic right after treatment, and then will start on pills too. This is the first siting of ooze, and I'm not scared of it...but I know to report it now, and not try and 'mentally fight it'.
Thursday is the day we meet with Dr. Wolfe in Dallas. He is another neurologist, but studies and test quite a bit, with Myasthenia Gravis. From what I'm told, I expect we will be in a one-on-one meeting with him, rather than sitting in a room full of residents like a show and tell exercise (let's leave that for the ooze). We meet with him at 8am, and do more electromagasomethingoranother that afternoon, as a 'standard' part of the visit. This is where they insert a short needle (sewing needle size) into various areas of my head and body, to measure signals from my nerves and muscles. Atleast it's not a spinal tap or feeding tube...this is tolerable.
So, prayers up! Praying hard over this catheter, that we do not become infected. Prayer super duper hard for Dr. Wolfe and trusting that the 'right' thing will come from this visit. I know what I want to come from it, but know better than to try and force that into reality.
We'll report in!
*muuuuuuuah*
Rach
Thursday, April 22, 2010
Happy Thursday
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
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
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/
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