It would seem that I need to begin using the voice memo recorder on my phone, as I have these 'brilliant' ideas during the week, that I intend to share with you, fully trusting myself that I will not forget the topic this time , and when time is allotted to sit down and chat with you, well, I've forgotten of course.
This has been a good week. It is now 8.5 weeks since the last pheresis treatment, and 9.5 weeks since the last infusion, and I'll be bold and say 10.5 weeks since the last symptoms were noticeable. Good numbers! We continue to decrease the Prednisone and look forward to that wrapping up in a couple of months. So all in all, I'm doing great!
Comparing where we have been, and where we are now, I am a *very* happy camper. It feels like we've reach a plateau. What a climb, and what do we do now? I promise it wont be sit still and wait. No more waiting to see what MG or MS will serve up next. Our MG support group is taking part in the MDA's annual fundraising celebration in 2 weeks (Muscle Walk), Lee is training to ride in the MS 150 coming up in April (150 miles, Houston to Austin, 2-days!), and just after this, we'll travel to Las Vegas to take part in the annual Myasthenia Gravis Foundation of America conference. We keep busy!
We rest too, and we give thanks for the blessings we've received through all of this poo. The list o blessings is long, and ever growing. For example, I'm blessed to have just watched that big ole sun rise again, and that 8.5 is more than just my shoe size!
Sunday, February 12, 2012
Sunday, January 29, 2012
Week 7
Yes, it HAS been a while! Happy New Year!!! I really did/do intend on posting more often, but then I simply let time get by me. Honestly, its when I hear from you, that I'm motivated blog a bit.
Life is really, really good! I remain symptom free, and I'm not afraid to say that out loud. Tuesday will be 7 whole weeks, since my last pheresis treatment. Seven!! I've not been this long without a symptom, since the joy-ride began in November of 2008. Wahoooooo.... How long will it last, and what will we do when the symptoms return? We're not 100% sure, but I AM tired of sitting around and waiting on the next something to happen...no ma'am, done with that!
For now, the catheter remains in my chest. We are slowly bringing me off the Prednisone, and this should last for another 10 weeks. At about the same time, we anticipate the benefits from the initial Rituxan therapy to begin wearing off as well. We're keeping #5 around as a back up plan! Ya just never now when you may need a trusty ole tube to be hanging out of your chest. :)
Lee and I are blessed, and we know it! This year has started off very well, and we have lots to do in the new year. God willing, we'll keep MG and MS in the back of the car for our journey trough 2012.
Life is really, really good! I remain symptom free, and I'm not afraid to say that out loud. Tuesday will be 7 whole weeks, since my last pheresis treatment. Seven!! I've not been this long without a symptom, since the joy-ride began in November of 2008. Wahoooooo.... How long will it last, and what will we do when the symptoms return? We're not 100% sure, but I AM tired of sitting around and waiting on the next something to happen...no ma'am, done with that!
For now, the catheter remains in my chest. We are slowly bringing me off the Prednisone, and this should last for another 10 weeks. At about the same time, we anticipate the benefits from the initial Rituxan therapy to begin wearing off as well. We're keeping #5 around as a back up plan! Ya just never now when you may need a trusty ole tube to be hanging out of your chest. :)
Lee and I are blessed, and we know it! This year has started off very well, and we have lots to do in the new year. God willing, we'll keep MG and MS in the back of the car for our journey trough 2012.
Tuesday, December 27, 2011
On the 12th day of Christmas my true love gave to meeeeee....
Oh Friends, if you ever have a prayer request you need prayer over, please let me introduce you to the amazing prayer team I feel we have in our corner. Wowzers.. I can't physically introduce you to the people who are reading this, who are offering up good thoughts and powerful prayer across the globe. I won't even try to list people or groups by name for fear of overlooking anyone, but what I will tell you is that when you are serious and ready to get humble in asking God for help, these folks will also grab their megaphones and make sure the prayer is heard. Amen and amen!
Ok, I lied - I do want to send a really big hug out to the Christian Friends Bible Fellowship group at First Redeemer Church in Cumming, GA. Thank you for steadily lifting Lee and I up in your prayers, and for so warmly welcoming us during our visit.
Last I posted, we were ready to take on the last Rituxan treatment. In my opinion the start of this treatment was emotionally rough with some physical strain as well, but this is likely due to my expectations the therapy would work like pixie dust. Sprinkle a little here and there, and *poof*, magic happens! Not so much...but...maybe so.
Since our last Rituxan treatment, I've had only 1 pherersis treatment and this treatment was more as a precaution, as we were preparing to travel home for an early Christmas visit with my family. Today is 2 weeks since that pheresis treatment, and 3 weeks since the last Rituxan infusion. Right now, I'm sitting on our patio in Austin, enjoying the cool air, warm sunshine, and a lack of MG symptoms!
"In the past weeks of December, my body has endured: 3 weeks of cough and snot, 2 Christmas parties, 1 week of travel, and a visit frooooom mother nature." Please tell me you are humming 12 days of Christmas with me? Oh, my point.... My point is that in experiencing all of this, I would typically be walking around with tape on my glasses or fighting to chew and swallow my food at the very least. My chew/swallow, speech, vision, muscles...they're all good. NOW, I'm very, very nervous to type this out loud, and those around me see my squirm when I speak this...but...I think we are seeing the benefits of Rituxan! Amen and amen again!
Next steps are to step down on the Prednisone, which we are, to see if there is impact. We need to do this while the catheter is in..just in case pheresis is needed. Other than that...we wait. Well, we wait and I plan to kick it up a notch. Its time to exercise again (within reason). I've been lazy and using these diseases as an excuse to sit tight and *rest* the body. Yes, this is truly needed at times, however some exercise is totally appropriate. Heck, why not get up and *use* the body God has blessed me with, and show off his work a little, eh? (EE, the 'eh' was for you!) So many have watched me go from active to inactive, lets turn it back around and then enjoy explaining how it's all happening. ...yepper...that's how we roll.
Wishing you all a happy, healthy and joyous New Year!
Be blessed
Rachel
Ok, I lied - I do want to send a really big hug out to the Christian Friends Bible Fellowship group at First Redeemer Church in Cumming, GA. Thank you for steadily lifting Lee and I up in your prayers, and for so warmly welcoming us during our visit.
Last I posted, we were ready to take on the last Rituxan treatment. In my opinion the start of this treatment was emotionally rough with some physical strain as well, but this is likely due to my expectations the therapy would work like pixie dust. Sprinkle a little here and there, and *poof*, magic happens! Not so much...but...maybe so.
Since our last Rituxan treatment, I've had only 1 pherersis treatment and this treatment was more as a precaution, as we were preparing to travel home for an early Christmas visit with my family. Today is 2 weeks since that pheresis treatment, and 3 weeks since the last Rituxan infusion. Right now, I'm sitting on our patio in Austin, enjoying the cool air, warm sunshine, and a lack of MG symptoms!
"In the past weeks of December, my body has endured: 3 weeks of cough and snot, 2 Christmas parties, 1 week of travel, and a visit frooooom mother nature." Please tell me you are humming 12 days of Christmas with me? Oh, my point.... My point is that in experiencing all of this, I would typically be walking around with tape on my glasses or fighting to chew and swallow my food at the very least. My chew/swallow, speech, vision, muscles...they're all good. NOW, I'm very, very nervous to type this out loud, and those around me see my squirm when I speak this...but...I think we are seeing the benefits of Rituxan! Amen and amen again!
Next steps are to step down on the Prednisone, which we are, to see if there is impact. We need to do this while the catheter is in..just in case pheresis is needed. Other than that...we wait. Well, we wait and I plan to kick it up a notch. Its time to exercise again (within reason). I've been lazy and using these diseases as an excuse to sit tight and *rest* the body. Yes, this is truly needed at times, however some exercise is totally appropriate. Heck, why not get up and *use* the body God has blessed me with, and show off his work a little, eh? (EE, the 'eh' was for you!) So many have watched me go from active to inactive, lets turn it back around and then enjoy explaining how it's all happening. ...yepper...that's how we roll.
Wishing you all a happy, healthy and joyous New Year!
Be blessed
Rachel
Tuesday, December 6, 2011
Open Door Policy
Dear God
You and I chat often and I thank you for your open door policy. It is reassuring to know I can stop by for a chat whenever I feel the need. Thank you too for sending your memos over to my area. The nickname I use for your communications are 'God Winks' or 'God Nods' which is fun to acknowledge when others are around. Of course they ask, "What do you mean?"...and of course I start talking. Heck, when do I stop?
Speaking of talking, my speech is better these past few days, as is my vision and the chew/swallow muscles. Thanks so much for the science-minded people who created plasmapheresis. Its really amazing how much that makes in a difference for my body. Oh, and we finished the last of the 4 Rituxan infusions today, and honestly, I'm still holding out hope that this drug will also help us. It is amazing how it works, and awesome how it has impacted other diseases, over the years.
So, the reason I'm popping by today is that I need to vent a little more, and wanted to be more direct in my communication. Yes, I know you know my heart, and you hear me daily, but I want to be more mindful and focused. I suppose this is more for me, than you.
I can't quote verses for you today, but I don't think you mind. I won't bargain, because that's just silly. I will ask of You, because Your Word says we should.
Dear God, I'm tired and frustrated. Please make me well.
I do not question 'why' do we have multiple diseases, nor do I hate them. Each condition has afforded Lee and I opportunities we would not likely have encountered otherwise. Heck, these health issues have been the fire that refined our relationship early! We have a greater appreciation for living life as we know it, versus a life we all expect we should be living. I've learned to minimize expectations for things outside my control, and be more focused on what is real and present. If I'm being honest with myself, each condition has been a gift!
What we are dealing with is so, so, so small compared to the struggles of others immediately around us, and in our extended network. It really feels selfish to even ask, but Lord, I want to ask that the benefits of Rituxan kick in soon. I'll keep the diseases.. (whoops, bargaining....) It would be a big ole blessing if we are able to step away from weekly plasma treatments, and maybe even remove this chest catheter. Yes, we have different ideas of time, and I do trust Your timeline, so my prayer is that the benefits of Rituxan show up. period. Since this is the last medicine we can tinker with today, I pray the benefits show up. I ask that we are blessed with the benefits of this medicine, and a pheresis free life, if even for a short time.
Ok, that's all from me today. I know there are others standing online to chat too. Thanks for the time, and Merry Christmas!
Rachel
PS - I did not share this with Santa, but if you feel its appropriate, please do!
You and I chat often and I thank you for your open door policy. It is reassuring to know I can stop by for a chat whenever I feel the need. Thank you too for sending your memos over to my area. The nickname I use for your communications are 'God Winks' or 'God Nods' which is fun to acknowledge when others are around. Of course they ask, "What do you mean?"...and of course I start talking. Heck, when do I stop?
Speaking of talking, my speech is better these past few days, as is my vision and the chew/swallow muscles. Thanks so much for the science-minded people who created plasmapheresis. Its really amazing how much that makes in a difference for my body. Oh, and we finished the last of the 4 Rituxan infusions today, and honestly, I'm still holding out hope that this drug will also help us. It is amazing how it works, and awesome how it has impacted other diseases, over the years.
So, the reason I'm popping by today is that I need to vent a little more, and wanted to be more direct in my communication. Yes, I know you know my heart, and you hear me daily, but I want to be more mindful and focused. I suppose this is more for me, than you.
I can't quote verses for you today, but I don't think you mind. I won't bargain, because that's just silly. I will ask of You, because Your Word says we should.
Dear God, I'm tired and frustrated. Please make me well.
I do not question 'why' do we have multiple diseases, nor do I hate them. Each condition has afforded Lee and I opportunities we would not likely have encountered otherwise. Heck, these health issues have been the fire that refined our relationship early! We have a greater appreciation for living life as we know it, versus a life we all expect we should be living. I've learned to minimize expectations for things outside my control, and be more focused on what is real and present. If I'm being honest with myself, each condition has been a gift!
What we are dealing with is so, so, so small compared to the struggles of others immediately around us, and in our extended network. It really feels selfish to even ask, but Lord, I want to ask that the benefits of Rituxan kick in soon. I'll keep the diseases.. (whoops, bargaining....) It would be a big ole blessing if we are able to step away from weekly plasma treatments, and maybe even remove this chest catheter. Yes, we have different ideas of time, and I do trust Your timeline, so my prayer is that the benefits of Rituxan show up. period. Since this is the last medicine we can tinker with today, I pray the benefits show up. I ask that we are blessed with the benefits of this medicine, and a pheresis free life, if even for a short time.
Ok, that's all from me today. I know there are others standing online to chat too. Thanks for the time, and Merry Christmas!
Rachel
PS - I did not share this with Santa, but if you feel its appropriate, please do!
Sunday, December 4, 2011
Moderate Rant!
Welcome to December! Where does the time go? Dad always said the older you get, the faster time goes. I believe him!
The past 2 weeks have felt like they've both flown and crept by. Just before Rituxan treatment #2, my plasma was cleaned up. Just in time for turkey! Lots to be thankful for and the last thing I wanted was a slow swallow getting in the way of my properly giving thanks for a nice turkey and its close friends: dressing, gravy, creamed onions, green beans, etc. :)
Rituxan #3 was given last week. All continues to go well with this. MG symptoms continue to hover however, and after a little choking on Wednesday, we lined up pheresis again. It has been two weeks of double vision, slow chew/swallow and issues speaking. Rituxan #4 will take place on Tuesday, and I am now scheduled for weekly plasmapheresis...again.
I'm a little tired. That's a lie. I've very tired. Sick and tired of this STUPID disease. I've been rather mad these past weeks as well! I absolutely trust that God is with me, and He will not allow me to encounter more than I can deal with, but COME ON?!?! ...ok...that felt good.
Yes, I'm fine, just sharing some honest emotion.
Yes, it could be so much worse.
Yes, I trust that it will all work out the right way, regardless...(blah, blah, blah)
...dont you just feel like that sometimes? We all know the "right" things to say and what we are supposed to express, but you must safely express the real stuff too. Really, I'm sick and tired of Myasthenia Gravis right now. I'm tired of feeling like a guinea pig, and I'm mad about how MG has changed my life. There. I said it. ...ok...thats enough...I feel better now, thanks for listening.
Wheww...I'm now laughing as I type this. I should get coffee now...
The past 2 weeks have felt like they've both flown and crept by. Just before Rituxan treatment #2, my plasma was cleaned up. Just in time for turkey! Lots to be thankful for and the last thing I wanted was a slow swallow getting in the way of my properly giving thanks for a nice turkey and its close friends: dressing, gravy, creamed onions, green beans, etc. :)
Rituxan #3 was given last week. All continues to go well with this. MG symptoms continue to hover however, and after a little choking on Wednesday, we lined up pheresis again. It has been two weeks of double vision, slow chew/swallow and issues speaking. Rituxan #4 will take place on Tuesday, and I am now scheduled for weekly plasmapheresis...again.
I'm a little tired. That's a lie. I've very tired. Sick and tired of this STUPID disease. I've been rather mad these past weeks as well! I absolutely trust that God is with me, and He will not allow me to encounter more than I can deal with, but COME ON?!?! ...ok...that felt good.
Yes, I'm fine, just sharing some honest emotion.
Yes, it could be so much worse.
Yes, I trust that it will all work out the right way, regardless...(blah, blah, blah)
...dont you just feel like that sometimes? We all know the "right" things to say and what we are supposed to express, but you must safely express the real stuff too. Really, I'm sick and tired of Myasthenia Gravis right now. I'm tired of feeling like a guinea pig, and I'm mad about how MG has changed my life. There. I said it. ...ok...thats enough...I feel better now, thanks for listening.
Wheww...I'm now laughing as I type this. I should get coffee now...
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