Be Blessed

Day 1, stable vision. I think its important to count the good days too! Today is the first day in a long while, that I've felt more like myself. The right blood levels are climbing, so I have more energy; Eyes are calm and seeing clearly, so I feel less confused and more balanced; Mouth and speech are normal, so I'm more inclined to eat (and talk...I'll say it); the plasma pheresis treatments are going well, so I'm not getting physically sick after each one. Day 1! Its too easy to count the negatives, and I have been lately. I've been mad and very upset about where I am, and doing the 'why me' thing. That's ok, and I know that's ok and healthy to acknowledge those feelings, but its best not to dwell. So I wont...

Myasthenia gravis moves in waves, or patients experience flares. Sometimes medicines and treatments quiet these flares, other times they can't. For me, the symptoms range from double vision, weak speech and swallow, to weakened neck, shoulder & leg muscles. My treatment/medicine is truly the plasma pheresis.

In looking back over my attempt at blogging this past year, I reflect on my original goal. First, to help me avoid dwelling on my 'condition', I wanted communicate as much as I can about Myasthenia Gravis; to make the world aware this disease is around, to share the experience, the symptoms, the emotions, the frustrations and the successes that can come with MG. Second, to actually document my reality and make communication simpler to share with family and friends. Third, to clearly explain the divine source of my strength and energy, which is so necessary to get through all of this crap! :-D (Don't worry, He's heard me say much worse). Its been a long, trying year and we hear that after 2 years of MG, the symptoms tend to stabilize. We're still waiting... and while we wait, we appreciate. You should do the same.

Before your body slows you down, make a point to slow down this holiday season. Don't get lost in the speed of the commercial holiday season. Be present! Savor each moment you have with your family and friends. Look each person in the eye while you're speaking. Looks past their eyes and into their soul. When you exchange greetings with anyone, be sincere. If you can't be sincere, be quiet and smile. Most of all, let yourself feel the blessing of life. Regardless of what your faith is, what you believe in, or what you call it, feel the blessing of having life, of having loved ones around you, of having the amazing gifts that you do, and that you're here right now experiencing another day. We are so small and yet so wildly empowered. Don't miss that.

Day 1. Today was a good day.

Thank you all for your awesome love and support this year, sincerely!
You are a blessing to me!

Get your motor running

It has been a wild and crazy couple of weeks. After Thanksgiving, we took a short trip to GA for an early Christmas visit, and to celebrate Mom's birthday. Great time in chilly GA, seeing family and friends. We were also able to join Mom and Dad in their Sunday School class, while there. You walk into the room, and have the feeling come over you that God's business is being done. What a powerful group of prayer warriors! We had turkey and dressing for several days too...yumtastic. After shopping and resting and eating and resting, it was time to head back to TX. Double vision and all. Yeppers, that dang Myasthenia made the trip with us. Seems my body is not able to vacation away from the pheresis schedule.

Since mid-November, I've been dealing with a persistent pain in my back and ribs. It moves from front to back or side to side, but in large part it was all over. Originally, we thought this must be related to MS. Since this is a new disease for us to learn about, it only seems logical to blame it for any new symptoms. Wrong.

While shopping in GA, we ran into one of my dearest friends from home and she shared struggles her family was dealing with, regarding a different auto-immune disease. Some of their symptoms sounded like mine, and this prompted me to call our Pulmonologist in Austin and schedule an appointment upon our return. Good thing..after the Dr. visit on Thursday and a CT scan of my lungs/chest, and a different scan on Friday morning after pheresis, I was admitted to the hospital for blood clots in my lungs. Wha?!?! Really? Are you KIDDING me? I do my best to keep a smile on my face, but this time I was mad.

Evidently my lugs have had blood clots for a few months, causing the pains/breathing issues I've had since August. Some of that was MG I'm sure, but you don't know what you don't know, ya know? I didn't know the symptoms of Pulmonary Embolism.

So, as of late, we're treating the MG with pheresis and drugs, the MS with drugs, and now the PE with blood thinners..more drugs. Have I mentioned I dont care for drugs? This is frustrating!
Poor Lee, he's held me a couple of times this past week as I just cried out of being exhausted and mad. After I vent it out a little, I'm better. We just keep reminding each other that this is ours for a reason, although we may not understand it. If you've learned with us, a little bit about a disease called Myasthenia Gravis, then we've done good! If you've learned with us, that auto-immune diseases tend to show up in multiples, then we're doing really well! If you learned with us, that you can ride any of these waves if you let God power your boat, then you're helping make this journey worth the while. Make sure you're boat has a Hemi in it!