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

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!

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...

Can you hear the circus music?

Today, I am frustrated. My eyes are getting weak, and my speech has already began to fade. Yeppers, late last week, and right on schedule, the dang MG symptoms started to surface. Was this expected? Of course. Did I hope it wouldn't happen? YOU BET!

I didn't really get my hopes up for a 1-shot miracle cure from the first dose of Rituxan, but by golly, this gal was holding out a little hope. What's next? What do you do? How do you avoid choking on Thanksgiving Turkey???? ...now you understand my priority! :)

Considering my appetite these days (thanks steroids!), I want to eat all the turkey I can! The wonderful team of nurses are working with me to do a plasmapheresis treatment tomorrow, so that we get this in before the 2nd Rituxan treatment on Tuesday. Oh the juggling act! Thank God for these amazing people, who know me and want to help.

One down, three to go.

That didn't hurt at all! Day 1 of Rituxan treatment, and all is well. What did I expect? I dont know, nothing, everything, something...but calm were the winds. It has been roughly a year since we began talks about this drug, for the Myasthenia Gravis, and finally the day arrives.

I've had mixed emotions about it all really. Super glad that we are able to try this drug, especially after hearing so many positive reviews from other Myasthenics who have had success. A bit nervous that we will find a dead end on this road as well. It feels like a routine anymore, that we try something new, get excited about possible results, only to learn that the results are minimal, if at all present. Hopeful that this treatment plan will teach us something new and that this may be a great step away from the only thing that has worked - plasmapheresis. Scared about the risk for other issues, although those risks are small. Curious, I am a walking science project, and I'm excited to see how the MG and MS will respond to a 1-shot wonder drug. Really two birds with one stone? Skeptic, see 'nervous' above. Trusting that no matter what comes from this experience, that good will shine through, if not for our walk, for the journey someone else is on.

Today, I sat amongst people taking drugs to save their lives. Our infusion was simply intended to try and improve whats already good. I have no complaints. The range of emotions is wild and a bit exhausting, but I'm blessed to experience each and every one of these crazy emotions, because it means I can still feel.

Treatment 1 of 4 is in the books. We'll tackle this again next week, for treatment #2. I expect next week will bring on other emotions and curiosities. In the mean time, I'm just sip my sweet tea.

Not Much

Treatment six of six...will this really be the last one? I'm afraid to get my hopes up, but this is the theory. Today is the last of the scheduled pheresis treatments and Tuesday we begin the new drug, Rituxan. Lots of positive feedback on this drug, from those like me. Yep, there are others out there, like me. Myasthenics who do not respond to typical treatments. I'll admit, my mind expects we are a hardy bunch, who must be stubborn as all get out!

I dont have much to say today...maybe thats why I'm willing to type. I do get a little sad to think about leaving my nurses and doctors again...this is my family too. Suppose we could find better reasons to gather.

Ready, Set, Rituxan is a GO!

Rally the Rituxan!

We have the green light. We're going to try Rituxan. I'm still learning how to spell that word. This past week and this coming week, we are pheresing (is that word?) my body, a total of six times. Three down, three to go! Why? We do this to make my body as strong as possible, and then try to avoid plasmapheresis, after the initial Rituxan treatment. Why? So as to avoid removing the drug from my body, before it has time to do what it needs to. Its debatable if it happens, but why risk it, right? Why? Because I said so!

The Rituxan will be administered once a week, over four weeks. This seems to be the protocol used for other conditions/diseases, so it is also being applied to treatment/management/fight against Myasthenia Gravis. Oh yeah, did I mention the Rituxan is intended to help manage the Multiple Sclerosis as well? Bonus Plan!! Two diseases, 1 stone!

So its time...time to try something new and see what may be in store for us. The hope and goal is after the initial weeks of Rituxan, that my body will not need plasmapheresis. Considering I don't last much more than a week or so now, between treatments, I feel we'll know quickly if the Rituxan is helpful. By quickly, I mean after the 2nd or 3rd week of treatment.

Ah heck, who knows....just send up a prayer and buckle in. We're ready to kick start this new ride!

Cha-Ching!

(I've been start-stopping this over the past 2 weeks. Ignore the choppy thoughts.)

You know that place you sometimes reach, where you're just a bit numb and aren't sure which way to move? I dont mean your leg fell asleep while sitting too long or that you had one beer to many and feel off balance, its more the like the feeling you may have after checking out with cash at the grocery store and receiving a penny back in change. You had just enough to cover what you needed. It's all good!

If you really slow to think about it, that's a 'wow'. Did you plan well? Divine? Scripted? Does it matter? It worked out well. But, when you DO stop to think about it, WOW. How many things lined up just in time? What situation presented itself so that you you had that amount of cash available? What did you pick off the shelf and why? Were you swayed by a discount for the store brand? Was someone standing between you and the item you really wanted, and you settled for something else? Did you take a coupon off the shelf? Lots to take in...

This week has really been on of those weeks. SOOO many 'wows' that it really does overwhelm me to try and think about it all. Many things seem to line up without my doing much, so I'm doing my best to stay out of the way. To know me, you know it's tough for me to sit quietly and observe. To that point, I've had several of the "why me" days lately, and not because of a large pity party, but more because I'm curious. Why me? Why now? My brain is alive and curious! ..again..trying to avoid influencing or being controling.

We enjoyed an awesome trip to Maine, and I'm still vacationing in my mind. On this trip we were blessed to meet two wonderful ladies, Lee and Tammy. Lee and Tammy and Lee and Rachel, had a crazy fun time meeting each other "after all these years." (New-Lee, I stole that from you, thank you.) The bond we all forged very quickly, began after we flew into Maine on the same connecting plane (same row; didn't meet here), then proceded to run into each other 4 times, over as many days, in different locations of this vacation destination, covered in tourist. No, we weren't part of the same tour group, nor were we staying in the same hotel. Anywho, collectively, we finally accepted something bigger was at work, and it was time to officially meet. Our lives overlap on sooo many levels; more than I'll go into out here. Sufice it to say, we know the same fight in life, we know the same motivations, we share the same passions, we love to live life. Why? ..because we can!

I dont know 'why' Myasthenia Gravis or Multiple Sclerosis or freckles or long toes or type B+ blood or a love for fried chicken livers, are parts of my life. I'll never understand it, nor should I. My job is to appreciate that I DO have these gifts in life, and to learn how to live with them. Appreciate all that you have and celebrate that with others; share your experience. Our encounter with Lee and Tammy overwhelmed me in a way I can't really explain with words, but I can say it bolstered my core at the right time. Feels like a single penny in change.

Adventure Awesomeness

What an adventure this HoneyVersaryCation has been! I looked up the word 'adventure' this morning to see how it is Merriam-Webster was actually defining the word (these days), and it fits this trip:
Definition of ADVENTURE
1a : an undertaking usually involving danger and unknown risks
1b : the encountering of risks
2: an exciting or remarkable experience
3: an enterprise involving financial risk

Indiana Jones comes to mind right now. The week has been awesome! With the start of the week, I shared how peaceful it is around our cabin, and that remains. The past two days we've had rain, and OH WHAT A BLESSING to be able to see, feel, smell rain on the leaves, grass, my face.. its awesome! (can't smell the rain on my face, but you get my point)

We have found our way to numerous points of interest and learned so much. We've hiked (it was a walk, that became a hike - dang #21!) within the Acadia National Park, we were able to see the amazing work done to preserve the very impressive forest and vistas, the carriage roads created to limit destruction through out, the leaves which have begun to turn this week, the wild life (squirrels...lots..), and the ponds/lakes. Jordan Pond popovers were yummy! We've visited Fort Knox and the Penobscot Narrows Observatory which has an awesome few 420 ft up in the air! Yes, there was an elevator. We drove into Camden, and walked atop Mount Battie. We've watched the sunrise atop Cadillac mountain. We've hopped a boat and toured around several lighthouses on the coast. We've walked through the Asticou Azalea Gardens. We've...shopped, we've made new friends, and we've enjoyed a few lobsters (Lob-stah)! If we are 'friends' on Facebook, you've now seen each of my lobsters..oh yum..

This trip has been awesome! Awesome is really the word I'm struck and stuck with, because there is so much more happening than simply a trip to celebrate our HoneyVersaryCation (trust me, M-W.com wont find that word for ya). In a nutshell, this Adventure has been awesome because of the risk we've taken, chosen or not; the remarkable experiences we continue to be presented with, both planned and unplanned; and the people we are guided to meet and learn from, either expected or unexpected.

So much awesomeness going on right now, that it will require another blog, on another day, with another breath of fresh air. The school bus just drove by for the neighborhood kids, and I have double vision...it must be time to watch the rain, and get my 2nd cup of coffee.

....Shhhhhhh, listen...

Happy Honeymoon! Lee and I have made our way to Maine, for our next adventure. It's beautiful. SO green..but then again, any color other than burnt is beautiful these days. A few fall colors have begun to arrive here, but its 'mainely' green. Har Har Har

I'm up with the sun again today, and soaking up this perfectly crisp morning air. Looks like North Georgia, feels like Colorado. My coffee is hot, my feet are bare, the weather allows for shorts and a a fleece pullover. Can you picture this yet? OH, bonus round, I'm sitting on the back porch with my feet up, overlooking a large yard and big trees, listening to the crickets harmonize with the gravel road and Loretta Lynn. NOW you can see it, yes? Peace. What do you do with this kind of peace and quiet...well, you sit still and think of course, or you make a lot of noise and try to avoid yourself. I'm difficult to ignore..for good or bad..even I admit that.

So I says to myself, "Self, hush. Listen" ..and we did. No joke, first, I listened to two crickets tune up. They had a fascinating sound pattern, before they settled on the standard tune "chirp, chirp". I just imagined how much work their tiny wings were doing to create the sounds, and then how much fun they must be having staring at each other, saying "oh yeah, well try this..." Then within that quiet, I hear the breeze ramp the leaves up with what would be similar to a high point in an song. It was well timed. Next, was a very brief accent of a truck on gravel road. Maybe the start of the 2nd verse, with added mystery or grit. Lastly, the neighbor tuned in an old radio (or so I thought) and we added Loretta Lynn to the orchestra. For those who understand my past, it felt like a Sunday morning at WHNE. All this and the sun is shining down, through the big ole mass of trees.

Hush. Peace. Quiet. This lasted for maybe 30 minutes, before traffic picked up and the crickets started to fade. But it happened. I was there. I can still hear it..in my mind.

What does this blog post have to do with Myasthenia or MS or health related matters in general...not much, and yet everything. Peace be with you.

Blah, blah, blah....

We hiked! We lived..I lived. These other rascals are all in wonderful shape of course. I've let my exercise program fall by the way side, which is not suggested. I don't care what your fighting, if you can lift an arm, a finger, a toe...exercise it! NO excuses!! (Yes, there will be a few examples out there that slam me to the mat with that emphatic statement. I concede)

Hike and all, we really did enjoy a wonderful trip into Telluride with a great group of friends. Spent a day in Denver managing business and seeing a few other friendly faces! Once back in Austin, TX, we were tired. Time for treatment! Yes indeed, it was time to spin the blood.

Symptoms were not horrible, but my vision had doubled and my swallow had slowed. Since I'm only on prednisone at this time, I still like to wait and see what my body will do. Living Science experiment! Wait until you see my at the next Science fair. My demonstration *will* take 1st prize! ...or not... :)

Oil change was Thursday, and now after this single pheresis treatment, I'm feeling very good. It takes a few days and a few naps, for my body to really absorb/accept/acknowledge/calm down/fall in line/stop fighting the benefits of the treatment. Yesterday, while getting up early to help out at church, and while driving ahead of the sun, and then while watching the sunrise and reading the sale ads (not the paper, needed more coffee), I really realized I was seeing clearly and felt good.

Blah, blah, blah....I bore me with this stuff...I can imagine you've gotten up to reheat the coffee by now. I should do the same.

All in all, I feel good! We will schedule a next oil change for me this week, just ahead of Lee and I taking off for our next adventure: Maine! That's right, we have a honeymoon date with a really big lobster and a stick of butter. Not sure they've officially met yet, but they will...in my belly....

Take That!

I did it for me! Today, we hike a hill/mountain/roadside. Call it whatever you like, but we did it. This weekend, we are vacationing in Telluride, CO. This is my first trip! Yes, after having lived in amazing Colorado for ten years, I never made it to Telluride, and I am so happy to share this new experience with my husband. Honestly, for me, this weekend, began as a talk about flying into Denver for a Saturday AM hike up a nearby 14er (fourteener = 14,000+ foot mountain). I was feeling really strong when the idea struck me. More than anything, I wanted..no, needed..to strike this event off my bucket list and my body was working with me when talks began, so why not!

Ok, a few months down the road, the body isn't quite as strong, we're not around Denver, and we didn't do a 14ner. It soooo doesn't matter!!! We are in the beautiful Colorado San Juan mountains, we DID hike a mountain, and we DID reach our goal today, which resided at roughly 10,000 ft. Wow! My chest is tight just typing that.

This southern Colorado mountain destination is literally tucked into the in the San Juan mountains. The scene ray is absolutely amazing, and something that my little pictures do no justice. So I must say, now post hike, I feel good!!! I hiked...at altitude..and survived!! My feet and hand muscles are twitching like crazy. That's the Multiple Sclerosis at work. My speech and neck are a bit weak. That's the Myasthenia Gravis at work. My chest is reminding me that I am very much out of shape and have converted to the 489ft altitude of Austin, TX. That's my pride at work.

A fellow MGer, Ron, recently hiked all over the east coast and lived to tell the tale too. Thanks for providing inspirations Ron!! We may have MG, but MG doesn't have me! Take that auto immune crap-ola. :)

Pheresi-fied

Day 12! "OH MY GOODNESS WITH THE COUNTING, Rachel"!! Its just something to pass the time, really. None the less, almost 2 weeks without symptoms. I am so grateful for the person/team/man/woman/whomever, who invented the wonderful catheter contraption in my chest. Truly it is amazing, and after the installation 2 weeks ago, and the pheresis treatment on the same day, I was back to normal. Well, what is normal?

Per my Dr. orders, 6 pheresis treatments have been ordered and we've completed 5 of these. The last one we'll spin tomorrow. What's next? I dont know. We dont know if the ramp u in symptoms over the 3 week time span was simply a Myasthenia flare up which I couldn't get past(the heat here is nuts!), or if I really had been was noticing benefits from the immunosuppresant that we are no longer taking (I go back and forth on this). Either way, that was then, here I am now on steroids, upright and on the topside of the grass, sipping coffee! YAY me!

In the meantime, football is ramping up which equals happiness for me. I think I equate football to cool weather, and thus my joy (Go Broncos!). September holds 2 trips for Lee and I. We'll visit with friends in Telluride, CO and then Maine for our long awaited honeymoon ...awwww...lovie!!! Life is good, and we try to soak it up one day at a time. What does tomorrow hold? Who knows? ..well, i know who knows, and by golly, so long as HE's in charge, I'll just not worry.

Round 5

Well well well, what do we have here? Its the need for another permacath, eh? Yes, sir. Its go time.

Over the past few weeks, my symptoms have been building up. Today, my neck is fighting to hold the noggin up, my breathing is labored and my speech is failing. As we've said, had we not been here, this would be very scary. But we have, and the most immediate thing we can do is plasmapheresis, which of course means installing a new permacath. So, we're at the hospital now...where everybody knows your name!

Thank you God for the amazing support from those who will be helping today, most directly fight this stupid disease. Thank you as well for those who cheer us on and lift us up to YOU in prayer.

Cath #5, you ready? Lessgo!

Medicinal Coffee

Today I enjoyed watching the sun rise (kind of) on Howard Road. We are in Georgia, visiting for a long weekend, and today we rest. We've been busy! It has been excellent to visit with Aunts, Uncles, Cousins, old friends, and family, from all over! We drove to South Georgia for 2 days of hugs and site seeing, and yesterday spent time in Atlanta proper. (Another interesting saying...'proper'). Today, we rest on Howard Road. Tomorrow, we fly out.

The past few days, I've woken up with a difficult time breathing. Could be an allergen in this region that I'm reacting to, or that the symptoms are creeping. This is week 2 of double vision. Yay. Did you pick up on my sarcasm? We are just in that limbo area that will work itself out soon enough, but in the mean time, its just not fun. Slow speech, swallow, blah, blah, blah...Its Myasthenia Gravis. It could be SO much worse.

Today, I enjoyed sitting at the dining table with my Dad, sipping on coffee. He read the paper while I plugged away on the keyboard here. I told Dad that I'm pretty sure there are strong medicinal properties found in this coffee cup. Something about sitting down with your Pa over a cup of coffee, that seems to make things alright.

Maybe we'll go shell peas now...or sit and stare at each other. I'm OK with either.

Really?!

Just a little bit frustrated...we're slipping down the hill again. This week has been more difficult, with labored breathing, weak neck, mouth, eyes...blah, blah, blah. Eyes have doubled up too. Myasthenia Gravis just sucks. There. I said it.

I just took part in a conversation over the phone with friends who do not know of my condition, and of course I try to speak and begin to sound like a drunk. And no, I'm sipping sweet tea for the record. ARG!

So yes, the tinkering we've done was needed and I've been very excited about getting off of the immunosuppresant..but..this new territory..on steroids alone...may not work for this MuSK MGer. We'll see. Its just not as easy as flipping the light switch. More tinkering to come.

I'm not in crisis mode, I am functioning just fine. I'm just grouchy because exactly what I tried to protect myself from, is taking place. My guard was down, I got comfortable and almost forgot about this pesky disease, then *wham*..there it is again. Every good story needs an interesting beginning, right? Maybe this will begin the next chapter of something grand...a new drug, a new treatment, a cure!
Who knows..

Sorry, I vowed to share the not so cute stuff with you too, so here it is. Excuse me..the music has begun and its time to walk around the chairs again. Hope to get a seat!

Keeping my head up

Where have you been? I've been chatting away and turned around to only see me, myself and I were within earshot. (Where does the term 'earshot' come from? I'm stumped!) Yeppers, we've been chatting up a storm over the past month and quite honestly, they bore me. We've been talking...correction...I've been talking to them (to me) about this crazy Myasthenia stuff, and feeling a bit low.

I want to tell you today is day 99...and that I'm still symptom free, but I can't. Over the past 2 weeks, they've been ramping up. It started with the small leaks of airflow with my speech. I felt it once, then again the same day, and it was then I knew we were getting ready to slide. Today, I'm working hard to keep my head up..no really...I'm leaning back as I type. Once my neck tilts forward, its over. The past week hasn't been crisis level, but the body is fatigued, my speech and swallow have slowed, breathing has been labored and yes, the eyes have even crossed..and uncrossed..and crossed again. OH NO! Oh yes.

As Lee and I agreed yesterday, if we'd not been through this stuff before, it would be rather scary. The symptoms are normal for me. Now, what do we do?

If you've been reading along, you know we've been tinkering with my medications. As of today, I'm simply on steroids for the Myasthenia. Are we seeing the effects of my body being totally off the immunosuppressant? Maybe. Do we need to add that back to the 'diet' plan? Could be. Is plamapheresis still an option. Absolutely. We'll figure it out as we go, and in the mean time, just gotta keep my head up!

Picking Beans

I can see my cheeks..on my face..in my peripheral vision. Some days, there is more cheek to see than on others, but my cheeks are there by golly..again. I'm eating like a champ, life is good! Today is 71 days today of good days, and we keep counting.

Yes, I'm still counting, and I look back now and then to remember the last time I didn't feel good. When did I last have double vision? When was it that I last choked trying to chew food or sip water? When was it last that I needed a nap? Ok, the nap is pushing it, because I still take those. When was it that I last needed help raising my hand? (It was 71 days ago Rachel, you've already shared this?! duh) My point is that it is important to reflect and remember the struggles, to appreciate the good. Count the good days! Mom and Dad would always get after us to stop looking up the row of peas/beans we were picking, and look at how much we'd already completed. It's a good life lesson.

June was Myasthenia Gravis (MG) awareness Month, and by golly, I'm aware. We continue to decrease my immunesupressant drug, and will be done with this later in the month. We're also playing limbo with the steroid to see how low I can go, before symptoms show up. We know they work, so we'll just "tinker till we caint" (now reread that with the best twang you can). In the midst of living symptom free, I'm back to my fighting weight and have actually had to go buy bigger pants. See, I'd given up on ever fitting my clothes from 2+years ago, and gave them to Goodwill. Whoops. I am now allowed back into the women's clothing section, so I feel good.
To be fair, in any other situation, going up in size would freak this gal out. None the less, I have my bucket of beans, and I'm remembering where we've been, and I'm pretty happy to be right where

Let's Float!

Hi Friend! I've missed you! Really...I have. Yes, I'm serious! I know, I know...me and serious aren't often paired. Its been a little while, so let's catch up. First and foremost, June is Myasthenia Gravis (MG) Awarness Month. Have you heard of MG? If you can simply pronounce the name of this disease, you are among a very small population. Thank you for joining us!!

Since we last chatted, I've been really good. I have no complaints! The steroids are doing their job, and I'm living pheresis-free. It would require a calendar, but it seems its been roughly 6 weeks without a plasma clean up? Can that be right? It has been 50 days of goodness. I DO know that. If you've been visiting with me over the past year, you know that in between MG flare ups, I began to count the good days. Emotionally, it is far better for me to count the good days, rather than how may days you're in a crisis. Focus your mind on where you want to be, and get there. Protect your thoughts!

Belly sleeping is in full effect! It has taken some time for the comfort level to return, but by golly, its back. I don't have to dodge water in the shower. I get to wear the seat belt rather than slide my arm out/over the belt. Today, I'm going to 'float' the river (i.e. lay in a tube, and lazily float down the river) and get wet!! No more nightmares about an accidental fall into a pool of water, knowing we must go to the ER right away for IV antibiotics. Its the little things...

I say that quickly, but now slow the thought down. It IS the little things. We will forever deal with MG. The disease and symptoms remain with me, but now, not living in a constant crisis mode, we are able to much more simply deal with the disease. We are learning to live life at a different pace. Declutter. Prioritize. Who knows how long I'll be steady? Everything could swing tomorrow, but until that time, I'm going to soak up the peace. Enjoy the quiet. Savor the flavor of every thing I can eat and not choke. Be still. Respect Day 51. Be excited for Day 52. Seriously.

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!

Coffee Talk

Happy Sunday to you! I'm sitting in the church parking lot for just a bit longer, before going in to help with set up. I really enjoy my role with the hospitality team, because my tasks are focused on preparing the coffee and donuts. Um, YUM! When I started to visit Gateway (on my own), the coffee/donut station, was my safety net. The place I could go and quietly observe the natives in their natural habitat. Well, I should say the coffee calmed me and allowed me to become a bit more comfy with my surroundings. Anyway, its almost 'go' time, but before I do, this is my time with you!

I find myself more chatty on Sunday mornings just before church. We arrive early, and while Lee is building up the stage and such, I hang out in the car and wait to see the sunrise. No sunrise this AM. :( Of course it rose and is shining somewhere, just not in south Austin. Lots of cloud cover. The birds love it though. They've been yelling at each other since we arrived.

It has been a good week! After 3 weeks off pheresis, I did go in for a 'tune up' this past Wednesday. Of all the weeks, this was the week my body was taxed most (again with the TMI topics), and the symptoms started to show up. Slowed swallow, speech was altering, eye muscles were starting to fight me. Rather than letting the symptoms build up, pheresis was a great alternative. Glad catheter #4 is still around. I was mentally debating, "increase steroids and try to avoid pheresis, or get the pheresis and leave steroids alone?" As if it was really mine to determine, but after speaking with my Doc and letting him know a treatment was scheduled, he said to leave the 'roids as they are. Good deal!

All that said, the past 2 weeks have helped me to remember that yes in fact, I do still have Myasthenia Gravis (MG). It doesn't go away, but it can remain quiet in your system at times. Many people experience this remission period, either naturally or via medicine. At this point, I'm neither, but getting closer to a medicine managed remission. Or so I hope.... The past month has been a complete blessing! The improvement has really allowed Lee and I start thinking about places we want to go, things we want to do, and by golly, plan our honeymoon! We're now in a place where our life doesn't have to be focused on MG, but instead can be built around it. It feels good!

Its time to make the donuts - Let your day be blessed!

Peace be with you too

Day 40 and 10 days. Hummm....what's she doing now? Another number?

I'm sitting on the couch right now, with the porch door open. Its overcast and cool this morning, and the birds are on fire! Ok, not a blaze, but they are chirping up a storm. I just watered the Topsy Turvey tomato planter and can hear the water dripping into to the metal catch pan we placed below it. Sounds like rain on a tin roof. Such peace and so much gratitude.

It has been 10 days since my last plasmapheresis treatment!! It really is amazing that i went from being so very dependent upon these treatments, to now beginning to think about when may be the right time to remove catheter #4. God is good!

For the past week, I find myself feeling like a kid out for spring break. Yay, class is out, and we get to goof off for a few months. Maybe the reprieve is short lived. Maybe we are preparing to graduate class all together. Who knows whats going on just yet, but I'm enjoying myself during the break. Perhaps I'm a little nervous to think this part of the journey is approaching. What's next?

Sitting here chatting with you, I know in my core that whatever comes up next, its crucial to remember where we've been, what the emotions are, how we deal with given obstacles, and to be able to relate this to others or to reapply the lessons we've learned. Whatever is next, we'll be ready. Cant wait and worry. Well, we can, but choose not to. Besides, today is day 40, and the birds are chirping. Its a good day!

Number crunching

Rally the numbers. We are a numbers driven society, so lets look at a few data points:

Last night, we wound the clocks ahead 1 hour and have lost an hour of sleep. Arg! ...but thank you God for the sleep given and for waking on the topside of the grass (as Daddy would say). ...ok...no more griping :)

It has been 3 weeks since Lee and I married (wahoo!), and yes, we’re still smiling and enjoy calling each other ‘husband’ and ‘wife’. Honeymoon planning in the works. We’re awesome!

It has been 2 weeks since our Myasthenia Gravis support group (Team MG) walked in the Austin MDA (Muscle Dystrophy Association) 2011 Muscle Walk event. Team MG raised over $4,400 for MG research, and the event collectively raised over $93,000 for MDA research. Wow! This was almost 3x monies raised last year, and attendance was doubled!

Drum roll please….bada, bada, bada, bada…..For the past 2 weeks, my body has tolerated doing only 2 treatments a week. This is down from 3. This is different. This is new. It has been a year since I was able to successfully function, with only 2 plasma treatments in a week. ..and I AM FUNCTIONING WELL! (Your prayers are felt!!!!)

Eleven (11) days ago, we added steroids to my daily medicine regime. It is a low dosage, and something we’ve fought for a while. Crazy enough, I do not feel the ‘roids have motivated the lesser treatments. I started feeling better before the wedding and with the exception of the 4 days or so of symptoms, I have maintained this stability for the past…what…70days? …Since the blood clots in December…? Heck, you’ve been with me! You know! None the less, we’ll remain on them for now, and hope to drop them soon.

Day 26 or so! Yes sir, I’m still counting. Why not? What else is there? Work? Task? Groceries? Schedules? Bills? Crazy? Yeah, that’s all very real and part of my world too, but it really is minimal when I consider how the stress levels related to each of these ‘things’ really can drive my health. Daily peace, calm, prayer, priorities...real priorities...clarity. You really can make a difference in your day.

Day 26, it’s a good day!

Check your tokens

Day 11! Oh yeah, we're rocking and rolling now. Its amazing that after almost a year of planning, our wedding has taken place and is now its over. What an *awesome* night this was! what an awesome weekend! Two weeks ago, my vision doubled, and then I will tell you we prayed it away. One week ago, we were celebrating with friends and family from all over the world, preparing for our wedding on Saturday. Amazingly enough, my body has held up! Aaaamen!!

Myasthenia (MG), like Multiple Sclerosis (MS) and other diseases, is one with which your energy level is limited. The story is told in many different ways, but for brevity, imagine you have 10 tokens of energy in a given day. Much like currency, you must spend your tokens through the day, and once spent, it is gone. Imagine getting up and brushing your teeth requires 1 token. Cooking breakfast requires 2 tokens. Participating in a project at work under deadline with the boss yelling, requires 3 tokens. You've hardly reached lunch time, and already you're energy tokens have been greatly depleted. You still need to pick up the kids, buy groceries, cook, do homework, etc. Where does the energy come from? There is no such thing as an energy ATM, but you can save your tokens up...prepare for large spending! Our wedding weekend was just that, a large energy expenditure, but OOOOH so worth it.

No honeymoon just yet. Lee and I are already back in action, by contributing to and leading a team with the MDA's Muscle Walk fundraising event tomorrow morning. Such an awesome group of people, striving to help those fighting neuromuscular diseases. We are fortunate that Myasthnia Gravis is one of the 40+ diseases under the Muscular Dystrophy Association's umbrella! This Saturday may require an extra token or 2. Wait, I say that but think better of it now. In taking part in tomorrow's event, I will likely gain a token...boost my energy level a bit, by being around others like us. Actually...we have no problems...when standing next to those who can't stand at all. My tokens will be just fine.

Day 1

That's right, lets jump back up on that horse! I woke up this morning with single vision and reduced redness in my eyes. What normally takes 2 weeks to clear up, has only lasted for 4 days. Awesome!! So, lets start that 'Good Day' count over.....Day 1.

Are you counting your good days? Do you know why they are good days? Have you shared that you're actually having a good day? Hummm....think about the ripple effect you might start.

Day 1...keep it going....

Maybe...

Day 51...and holding....it's something like that. Day 50+ before the double vision came back. I could feel the eye muscles begin to tighten over a 2-3 day span, then caught glimpses of the twin images in my peripheral when I would turn my head quickly (driving). "Oh damn." That was my only thought. That was my perspective of the ordeal I knew the next couple of weeks would be.

I'm not certain if all myasthenics experience the exact same thing when it comes to double vision, but with mine, I'm unable to rest the double vision away. Once it begins, it typical last for 2 weeks. If you've read prior blogs, I've mentioned how my symptoms build up to double vision. This time it snuck up on me; suppose I didn't realize how much my body was dealing with, but it snuck up on me. Maybe I took my 50+ stable days for granted. As with anyone dealing with an ailment, my body wears down much more quickly when dealing with double vision, simply because daily routines require twice as much energy. Focus on which of the two toothbrushes you see, is real? Which corner of the table to do you avoid; which stair is the right one to step up/down; which car is the real one come towards you? OH, i know, driving with double vision is a no-no. I do rest more with double vision, but only because I'm tired. It wont make the silliness stop, however.

Lee and I will be married this coming Saturday. We are SOOO excited and have waited for this day, forEVER! I've prayed and prayed since April, to have single vision on this day. It could still happen, but if not, it will be OK. This time around doesn't feel as intense as it has previously-maybe my tolerance is higher. Those joining us for our wedding, fully understand that I'm a bit wobbly at times, and they'll laugh with me if I tilt over here and there-maybe I'm more accepting. After months of cold, gray weather, we will have a beautiful 70 degree day, perfect for an outdoor wedding-maybe my priorities are different. After a long wait and many trials, I get to marry the love of my life-maybe I'm trusting all will be OK.

I was really, really, really ready to pout about this round of double vision. Of course it isn't what I'd hoped and prayed for, but if life were all tied up with a pretty bow on it, what fun would this journey be? If everything went down a planned route, what would motivate us? Now I pray for ease in dealing with the double vision on my wedding day, and strength to keep my light shining through the event!

Still with me?

Well hey there! (in my best southern accent) It has been a while!!


How has your new year started? Have you made an effort to savor the good and forgive the bad? I have!! My goal was to begin counting the good days, and quit focusing on my bad days. Today is day 38 or so, and its a good day! That's right, day 38 of minimal symptoms! ..and now I am knocking on wood and wincing since I've typed this out loud. Day 38.

Every night when Lee and I prepare my injection of the MS drug, I have a journal where any symptoms or issues are logged. Originally this would start off with "5 to L thigh", meaning the injection setting was at 5 and that we injected into my L thigh. You rotate 7 injection sites, and therefore track your activity....anywho...rather that starting each journal entry with the obligatory needle depth and site, I start now with "Day 38". Different perspective!! Rather than focus on the icky part of the experience, I choose to see the good.

I've taken a week to finish this blog entry. Began this on Day 33....I'm not sure why I've procrastinated, but I'm sure its because of laziness or fear. Afraid that when I say "I feel good" that it tilts the ride the other way. My prayer has been, and continues to be, "Lord, I want to show up to my wedding standing strong and seeing straight". Three weeks to go! I'm ready for day 53!!

My Myasthenia is still very present, and I can feel the symptoms when I'm tired. It's just enough to keep me sober to the fact that I must make time for rest. Plasmapheresis treatments continue taking place 3x per week. We wont tinker with this again, until after the wedding, when we will likely start a new treatment plan as well.

Thanks for checking in and asking how things are. Things are GREAT!! I have no complaints and am doing my best to enjoy each day for the joy that it is. Day 38..its a good day.