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
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Smile because you can!
Life is such an amazing adventure! One day you're cruising along with certain expectations, a planned route, and plenty of gas in the tank. The next, you're not sure where you are on the map and your compass fell beind that comfy seat you were in.
Smile because you can!
About Me
- Rachel
- Austin, TX
- My name is Rachel, and I have a neuromuscular disease called Myasthenia Gravis. This crazy condition was bestowed upon me in late 2008, and has the ability to render your body weak and sometimes useless unless proper treatments are administered. I've learned so much, and I feel blessed I am able to share. I'm nervous to write, but have learned that I should. Maybe you'll take something away from my nonsense.