It seems I've been finding every excuse to not post a report/blog/update. I have so many thoughts that creep through my brain day in and out, and so many that I actually want to share. ..and then I don't. I'm making the choice to spend 5 mins right now, to think about my journey, and to share those thoughts with you.
Alls good. Thanks.
HA!! Isn't that how we typically respond when people ask us "How are you?". I expect its really small talk and no one truly cares to know what's going on. So I don't dive in. Then I shake myself, and think, "Ya know what, if they don't want to know, they shouldn't have asked"....and I start to rattle off my 'stuff'.
Why do we shy away from our stuff? Is it because we don't want to burden anyone with it? Maybe we're tired of hearing ourselves talk? Maybe we don't feel that we're really interesting enough, or valuable, that someone would really care to know more about us. Yes to all of it, I'm sure, at one point or another.
For me, I've been tired of MG and sick of talking about it. I'm so blessed to have the experiences we do, through Myasthenia Gravis, but damn. Now, I'm only being blunt with you, because I'm pretty sure you'll understand me, not because I'm tired of being cared about or worried over. That's not my point! I've taken a mental break from the MG/MS game, because I needed to recharge myself. You have to care for your soul and be strong for the next battle.
In a nutshell however, all is great! We are now 8+ months since the infusion!!! Amen, God is great! I was able to enjoy myself this weekend, by swimming. Yes, swimming! I can't tell you how many nightmares I've had about falling into a body of water, with a chest catheter in. Ug. This weekend, we travel to the mountains to enjoy climbing around a bit. Next month, Lord willing, we'll travel to a beach to enjoy laying around a bit. We have traveled so much this past year, and what a joy it has been.
It has been nice to travel and not worry about bandages and supplies and symptoms and medical facilities and stuff. It has been a joy to be able to (cautiously) plan adventures with friends, family, on our own. It has been a wonderful break from a routine of hospitals and doctors (though I love them all dearly!). So many ask 'Where are you going next?" or they comment "You two travel more than anyone I know." That's beautiful! Who knows how long we'll have to travel? Who knows how long the peace and quiet will reside with us? Who knows how many National parks there are in the US? I don't know any of it...and I'm interested to find out!
The antibody levels in my blood have begun to increase again, which means a follow up infusion is in the near future. We'll schedule that soon and when we do, I'll embrace the therapy, because I've accepted it is necessary for me. This infusion therapy is a gift, after so much time without it. A gift in teaching me how to choose to live my life. Better put, choosing to live life...because I can.
..was that 5 minutes?
[ ;) back atcha]
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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.