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!
Sunday, July 31, 2011
Saturday, July 2, 2011
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
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
Sunday, June 12, 2011
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.
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.
Friday, May 20, 2011
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.. :)
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.. :)
Sunday, May 15, 2011
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.
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.
Subscribe to:
Posts (Atom)
