Permission to release control - oxymoron?

Friday, May 20th, the first time in 2+ years that I've not had something either hanging from my chest or taped tightly to it. Liberation!! My chest cather was beginning to show signs of infection, right on schedule. We had reached the 9month mark with Cather #4, and my worry began. I really think you have the power to think your body into action! My anxiety began about the cath becoming infected, because we'd not passed the 9 month mark with the prior caths. Then, all of a sudden, it was time to start the antibiotics and remove the tube. Which came first, my thoughts, or the lil bacteria critters? I dunno, and it really does not matter, its just a deep thought to consider over coffee.

Whats better? With the steroid use, we do not require Catheter #5 at this time. Yeah baby! Sure, it may be needed again one day, and if so, ok. I continue to have major reservations about being on steroids as a maintenance drug, but for now, I release control of the situation...as if I had any.

It really has been a mental struggle these past months, to realize we'd reached the end of the possible drugs to try, with the exception of Rutixan, and even this one they are reluctant to use. We met with our Dallas specialist yesterday, and he smiled and said that right now, most MuSK MGers end up here. It is what works, and that many will choose pheresis over Rutixan. Huh? Really? ...wow.

So we are here! Where? Right here! Next steps are to attempt to decrease the immunesupresant drug and see what impact this has, if any. From there, balance on the steroids. For how long? Who knows. Are there risk/benefits? Yes. Are there options..of course...but they dont involve functioning well and living the life I've been blessed with.

I release the make-believe control I have over this walking science project..for now. I'm trusting those who spent a whole lot more money on their medical degrees, are taking care of me. I'm trusting this is exactly as it should be..for now, and that its ok to rest and be strong. I'm trusting God has us here with purpose, and expect this is an answered prayer all wrapped up with a bow, that we simply haven't opened...yet.

I give my self permissions to release control..for now.. :)

Sweet Tea for all!

Its Sunday, and the sun is up. There really isn't much in my book, that outweighs the beauty of a sunrise. Something about seeing the sunrise reminds me of how small we really are.

I've been wrapped up in clutter lately. My clutter. Letting a lot of 'stuff' fill my brain and physical space. I'm beyond the spring cleaning excuse, so now its time to just get focused and clean up. Time to reset, refocus, and remember my priorities. I think this next week will help with this, as we will visit our MuSK-MG specialist in Dallas on Thursday.

It has been one-year since we started seeing Dr. Wolfe, and it seems we are now where he would have liked for us to be last year; on steroids and pulling away from plasmapheresis. I'm stubborn and it takes me a while to accept doing things not-my-way, but I surrender. None the less, I have expectations!

What do I expect? Happiness for all and endless supplies of Chick-fil-A sweet tea! (*insert beauty queen wave here*) Seriously, I expect to hear "Lets try Rutixan" at some point on Thursday morning. To be fair, expect = hope. I hope to hear that I would now make a good candidate for this drug. Not only would it address the Myasthenia Gravis, but it will also address the Multiple Sclerosis diagnosis. Double Word score!!

Who knows what will come of Thursday, but this is my hope, and I accept whatever the good Lord sends our way...so long as I can have sweet tea.

Internal chatter box

It has been a month since we last chatted, time flies! Honestly, we've been chatting in my head for many weeks now, with the various topics that I want to share. Then I talk myself out of blogging. Lots of self talk going on, about anything, something and nothing. Yes, all of that...in my head...scary. I willingly admit there is a real-life 'Bing' commercial going on in my noggin. Did I mention scary?

In the past month, I've had a short spell of double vision, some slow swallow and fatigue, and then a few plasma treatments to catch me back up from my experiment with coming down off steroids. Yes, I was working with the Dr. on that experiment, and he didn't really want to do this. At least we know now, how much work the immunesuppressant is helping (or not), and how much the steroids are supporting me. More and more it seems immunesuppressants are not able to do for me, what we had hoped they would. Ok, I wave the flag of surrender...Steroids it is....for now. Hopefully we can remain at the minimal dosage, and not need to increase! Hopefully my body will play nice and not require plasmapheresis! Hopefully after a month pheresis-free Catheter #4 can come out! Who knows?

We visit our specialist in Dallas next week, and expect he will agree, that we may be able to drop the immunesuppressant and try balancing on steroids for a while. Well, thats my next planned experiment, and I'm hoping he has the same great idea... :)

This Myasthenia stuff is a real pain in the butt...This is why MG is referred to as a snowflake disease, where no two people experience the disease in the same way. I suppose if MG were easy, I would become bored quickly and find something else to tinker with. Probably safer for everyone that I'm pre-occupied with me and the gazillion discussion about anything, in my head. I think God made me my own entertainment/babysitter. "Ah-ha!" Time to go add leaded coffee to the mix...

Have a great day!