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.
Tuesday, August 23, 2011
Thursday, August 11, 2011
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!
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!
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!
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