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.
Sunday, October 24, 2010
Monday, October 11, 2010
Dare I say it...
All is (still) well! I'm very tired this week, but that's fairly common.
For the guys, this may be too much info, so close your eyes.
For the gals, you'll appreciate this fact. Most women report exacerbated symptoms for this disease (and many others), during the week their cycle starts. Turns out mother nature really does stress the body out a bit, or the hormonal shift has an impact on our ability to tolerate. The guys who read along with us, are now smiling and nodding. Yes, I know you men have known this fact about females since the dawn of time...and we choose to believe we are only difficult...ahem...different minded, when it suits us. ;)
Men, you can uncover your eyes now. So, thank God, this week is another good week. Aside from greater fatigue and a weakened pallet at day's end, I feel good and remain steady on the MG med (Prograf), maintain the pheresis schedule (3x week), and look forward to our follow up visit with MG Dr at month's end. Sleep really does appear to help!
We're also on day 5 of the new MS medication (Copaxone). This *nifty* little medication is administered through a needle. Yeppers, daily injections. Its not bad...well not that bad. I think this is where I am now grateful for the many bee stings or ant bites I must have had as a kid. I know the sensation, and know it goes away.
This week's excitement is that my parents and Aunt Al come to visit this weekend, so we're looking forward to a laid back, restful visit. Especially after a visit to the Salt Lick BBQ...I see many naps on the horizon...
Even thought I can't see you there, thanks for reading along... xo
For the guys, this may be too much info, so close your eyes.
For the gals, you'll appreciate this fact. Most women report exacerbated symptoms for this disease (and many others), during the week their cycle starts. Turns out mother nature really does stress the body out a bit, or the hormonal shift has an impact on our ability to tolerate. The guys who read along with us, are now smiling and nodding. Yes, I know you men have known this fact about females since the dawn of time...and we choose to believe we are only difficult...ahem...different minded, when it suits us. ;)
Men, you can uncover your eyes now. So, thank God, this week is another good week. Aside from greater fatigue and a weakened pallet at day's end, I feel good and remain steady on the MG med (Prograf), maintain the pheresis schedule (3x week), and look forward to our follow up visit with MG Dr at month's end. Sleep really does appear to help!
We're also on day 5 of the new MS medication (Copaxone). This *nifty* little medication is administered through a needle. Yeppers, daily injections. Its not bad...well not that bad. I think this is where I am now grateful for the many bee stings or ant bites I must have had as a kid. I know the sensation, and know it goes away.
This week's excitement is that my parents and Aunt Al come to visit this weekend, so we're looking forward to a laid back, restful visit. Especially after a visit to the Salt Lick BBQ...I see many naps on the horizon...
Even thought I can't see you there, thanks for reading along... xo
Wednesday, October 6, 2010
My fear factor
I've been hiding. No excuses, except for fear. Why? Well, because things have been very good.
How crazy does this sound? I'm hiding out because I feel good and honestly, I'm afraid to talk about it or acknowledge that fact, because I expect it will end the streak. I'm not a superstitious person, but for some reason, I've become skiddish about this one. We'll see what happens.
Since my last note, 2 weeks ago, my vision cleared and I've had almost 2 really good weeks. Minimal symptoms, and eating lots. I'm excited to see the scale tipping in the other direction (weight on!). We met with the MS doctor and have direction on the medicine that is best for me (Copaxone). My case is mild, but we want to begin treatment in consideration of life 10...20 years down the road. Follow up scans will be done down the road, to watch the lesions. With the help of amazing friends, we moved me into Lee's condo last weekend, and the unpacking continues. I may have had slightly more 'stuff' than I thought I did.... :)
Lots of fun stuff going on this month! To keep up, I continue to rest up during the weeks, eat lots when I can, soaking up the cooler weather in Austin, TX, and enjoy every bit of my life. God has blessed me with so much, it would be a shame to stick my head in the sand and miss all that's going on.
How crazy does this sound? I'm hiding out because I feel good and honestly, I'm afraid to talk about it or acknowledge that fact, because I expect it will end the streak. I'm not a superstitious person, but for some reason, I've become skiddish about this one. We'll see what happens.
Since my last note, 2 weeks ago, my vision cleared and I've had almost 2 really good weeks. Minimal symptoms, and eating lots. I'm excited to see the scale tipping in the other direction (weight on!). We met with the MS doctor and have direction on the medicine that is best for me (Copaxone). My case is mild, but we want to begin treatment in consideration of life 10...20 years down the road. Follow up scans will be done down the road, to watch the lesions. With the help of amazing friends, we moved me into Lee's condo last weekend, and the unpacking continues. I may have had slightly more 'stuff' than I thought I did.... :)
Lots of fun stuff going on this month! To keep up, I continue to rest up during the weeks, eat lots when I can, soaking up the cooler weather in Austin, TX, and enjoy every bit of my life. God has blessed me with so much, it would be a shame to stick my head in the sand and miss all that's going on.
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