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!
Thursday, August 11, 2011
Monday, August 8, 2011
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.
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.
Tuesday, August 2, 2011
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!
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!
Sunday, July 31, 2011
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!
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!
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
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