My Ode to August 2010
Dear month of August, you were not my friend,
As you dealt me MG symptoms from start to end.
It isn't your fault, you must manage the heat,
but I tell ya what, you kept me off my feet.
Double vision started early, just after the 3rd.
Then slow speech and troubled swallow followed the herd.
This time around, you played your Ace card
And dished out body weakness; that symptom was hard.
Each symptom alone is very much a strain,
But dishing all at once? Come on, you're such a pain!
Today is the first day, in 3 weeks and a half
My glasses aren't taped (yet), and I really can laugh.
Granted this month has been really rather rough
But its times like this, when I remember that I'm tough!
Myasthenia Gravis and August, for you my calendar is now shut,
And as a sincere parting gift, you can both kiss my butt!
Sunday, August 29, 2010
Wednesday, August 25, 2010
clank-clank...clank-clank
While visiting MaMa's house (Dad's mom) as kids, we would hop up on the couch, looking back over the top, out the window and down the street to see the trains go by. I remember sleeping on that couch and hearing the train crossing the tracks early, early in the morning. Such a soothing sound..clank-clank....clank-clank...clank-clank. My sisters and I would watch the train go by and try to count the cars! It really did feel like the train went on forever, sometimes. We were watching something from a distance, and the cars looked much the same. We would count and count though, knowing there would be a red caboose at some point.
I drove along side an Amtrak train yesterday, while heading down the highway. No, I wasn't racing the train, but it did make me smile. Calming. This cycle of MG symptoms has been like watching the train at MaMa's. We know there is a red caboose on the way, and until it gets here, we just keep counting.
Last night, was the first night I slept through the night in roughly 3 weeks. My vision is trying to single up..the first time in almost 3 weeks. I'm eating as much as I can, and can almost speak without issue. The little red caboose is swinging around the corner and we're pulling this train uphill! Wahooooooo
I drove along side an Amtrak train yesterday, while heading down the highway. No, I wasn't racing the train, but it did make me smile. Calming. This cycle of MG symptoms has been like watching the train at MaMa's. We know there is a red caboose on the way, and until it gets here, we just keep counting.
Last night, was the first night I slept through the night in roughly 3 weeks. My vision is trying to single up..the first time in almost 3 weeks. I'm eating as much as I can, and can almost speak without issue. The little red caboose is swinging around the corner and we're pulling this train uphill! Wahooooooo
Friday, August 20, 2010
Walk it off
Remember the feeling you had in Gym class (P.E.), after you had to run a lap around the gym or track? Now, I mean the feeling you had before you became the super athlete you are now. Sheer fatigue all over your body, shortness of breath, body shakes and you just wanted to lie down? Then the coaches told you to raise your hands to your head and walk it off. Next thing you know all the kids are walking about, like rotating satellite dishes. Did that really help us, or just distract us long enough to let our bodies calm down? Who knows...
I bring this up because this is the feeling a myasthenic has, during muscle fatigue. Generally, this remains focused in the chest, shoulders and arms. When its time to shampoo the hair, I prop one elbow up on the wall to support the effort of washing shampoo in/out. Brushing my teeth, and I'm grateful for my electric toothbrush, but I still have to support that arm long enough for the brush to do its job. Arms are spaghetti, and often, I will use one to help the other with a task.
Then there are the neck muscles. I call it the wet towel experience. Go wet a heavy towl, and wrap it around your noggin as if you were drying your hair. That balancing act feels the same when your neck muscles are exhausted. Its hard to hold your head up. You prop your forehead on a cabinet while chopping something for dinner, you bend over the sink and hold your forehead when spitting toothpaste. If you look towards the floor, you sometimes have to push your forehead back up to look forward.
Don't forget the chest..where that whole breathing thing happens. Imagine a chest cold. Heavy sensation like a 15 pound cat were laying across you. The air isn't truly restricted, but its labored and short. If you could only lean forward, and move the pressure, you could get a deep breath and stretch the diaphragm. Ahhhh, what a feeling. That's what I'm doing right now. Seated, leaning forward and trying get that deep breath, and if i'm real lucky, the stretch. The momentum to really get a deep breath that leaves you feeling refreshed.
Just another day in the life of a Myasthenic, and don't get me wrong. Even though there are restrictions, everything still functions. For that, I am grateful!
Time to go walk around with my hands on my head...lets see if that helps...
I bring this up because this is the feeling a myasthenic has, during muscle fatigue. Generally, this remains focused in the chest, shoulders and arms. When its time to shampoo the hair, I prop one elbow up on the wall to support the effort of washing shampoo in/out. Brushing my teeth, and I'm grateful for my electric toothbrush, but I still have to support that arm long enough for the brush to do its job. Arms are spaghetti, and often, I will use one to help the other with a task.
Then there are the neck muscles. I call it the wet towel experience. Go wet a heavy towl, and wrap it around your noggin as if you were drying your hair. That balancing act feels the same when your neck muscles are exhausted. Its hard to hold your head up. You prop your forehead on a cabinet while chopping something for dinner, you bend over the sink and hold your forehead when spitting toothpaste. If you look towards the floor, you sometimes have to push your forehead back up to look forward.
Don't forget the chest..where that whole breathing thing happens. Imagine a chest cold. Heavy sensation like a 15 pound cat were laying across you. The air isn't truly restricted, but its labored and short. If you could only lean forward, and move the pressure, you could get a deep breath and stretch the diaphragm. Ahhhh, what a feeling. That's what I'm doing right now. Seated, leaning forward and trying get that deep breath, and if i'm real lucky, the stretch. The momentum to really get a deep breath that leaves you feeling refreshed.
Just another day in the life of a Myasthenic, and don't get me wrong. Even though there are restrictions, everything still functions. For that, I am grateful!
Time to go walk around with my hands on my head...lets see if that helps...
Wednesday, August 18, 2010
Can't keep my mouth shut!
I'm afraid to go to sleep. There, I said it.
Over the past few days, I've been able to eat, but my body fatigue has increased, and the 100 degree weather here, doesn't help. Now, at night while trying to sleep, my mouth will fall open. This is the MG at work..or not working as the case would be. Since the muscles are vacationing, my jaw will drop, then the mouth breathing begins, followed by dried mouth and throat and then shock and you're awake. I would venture to say this happens to everyone when you have a sinus infection or head cold, and you can't breath through your nose well. Same idea. Its midnight my time, and I need to sleep, but I dont want to be woken again, due to the startle.
Yes, I've tried taping my mouth shut. Its ok, I laughed too! I wear an eye mask at night for the same reasons, my eye lids dont close all the way (scared my sis with this once upon a time), so the mask helps keep the lids down and the light out. The combination of taped mouth and secure eyes, actually made me a bit claustrophobic ..so I can say I'll hold off on that trick for now.
Ug...I'm ready for symptoms to take a break...and I need to rest to help do this...so, I'll give 'er a go. Nap time.
Over the past few days, I've been able to eat, but my body fatigue has increased, and the 100 degree weather here, doesn't help. Now, at night while trying to sleep, my mouth will fall open. This is the MG at work..or not working as the case would be. Since the muscles are vacationing, my jaw will drop, then the mouth breathing begins, followed by dried mouth and throat and then shock and you're awake. I would venture to say this happens to everyone when you have a sinus infection or head cold, and you can't breath through your nose well. Same idea. Its midnight my time, and I need to sleep, but I dont want to be woken again, due to the startle.
Yes, I've tried taping my mouth shut. Its ok, I laughed too! I wear an eye mask at night for the same reasons, my eye lids dont close all the way (scared my sis with this once upon a time), so the mask helps keep the lids down and the light out. The combination of taped mouth and secure eyes, actually made me a bit claustrophobic ..so I can say I'll hold off on that trick for now.
Ug...I'm ready for symptoms to take a break...and I need to rest to help do this...so, I'll give 'er a go. Nap time.
Saturday, August 14, 2010
Gimme a big plate of YUM, with a side of everything!
How much fun it is to wake up hungry, and then *know* that you can go eat? Have you ever considered this? I'm not referring to the fact that we are blessed to have food in the pantry or in the 'fridge, I'm referring to the fact that your body will allow you to properly chew and swallow your food! Ooooh, the sun shines so much brighter on the days just following a series of MG symptoms. It has been a long week, as shared in the my last post. Not being able to really eat, was part of the week.
Many MGers, lose muscle control in their 'bulbar' region, head/neck/shoulders. This can result in many issues: difficulty breathing, raising your arms, holding your head up, speaking, chewing because your tongue has taken a vacation, swallowing because your throat muscles left with the tongue, facial expressions, double vision, or droopy eyelids. I'm sure I've missed a few. All that said to make the point that eating was difficult this week.
Last night, Lee greeted me with side dishes from Mann's BBQ in Austin. OH YUM!!!! First, I love Mann's BBQ because they cook wonderful home cooking..Georgia Style. Second, because they aren't afraid to fry a few things. :D I love fried okra, and Lee brought some home last night. Crispy food works well when your tongue doesn't; you dont have to move it much. Green beans and tater salad...I started eating, successfully, and may have eaten everything up. Maybe I shared..
This morning, I woke up and went straight for the kitchen, to make toast with Mom's Apple Butter. YUMMM again! Bread is a no-no for me when dealing with the vacationing tongue. You can chomp once, maybe twice, but then you have this saturated ball of dough loose in your chomper, sticking to your teeth or the top of your mouth. In lieu of your tongue doing its job, one of the trusty fingers has to step up to maneuver the mass to your back teeth for a proper swallow attempt. After that, you're hopeful a slip and slide party is going on back there, so the swallow attempt doesn't result in bread hanging out in your throat. You all know what that feels like. Ug!
Can you tell I'm rambling with glee? My facial area still feels like Joan Rivers' face looks, but I'm sipping milk without coughing, chewing bread without choking, and planning my menu for today...the Bulbar vacation is over!
Many MGers, lose muscle control in their 'bulbar' region, head/neck/shoulders. This can result in many issues: difficulty breathing, raising your arms, holding your head up, speaking, chewing because your tongue has taken a vacation, swallowing because your throat muscles left with the tongue, facial expressions, double vision, or droopy eyelids. I'm sure I've missed a few. All that said to make the point that eating was difficult this week.
Last night, Lee greeted me with side dishes from Mann's BBQ in Austin. OH YUM!!!! First, I love Mann's BBQ because they cook wonderful home cooking..Georgia Style. Second, because they aren't afraid to fry a few things. :D I love fried okra, and Lee brought some home last night. Crispy food works well when your tongue doesn't; you dont have to move it much. Green beans and tater salad...I started eating, successfully, and may have eaten everything up. Maybe I shared..
This morning, I woke up and went straight for the kitchen, to make toast with Mom's Apple Butter. YUMMM again! Bread is a no-no for me when dealing with the vacationing tongue. You can chomp once, maybe twice, but then you have this saturated ball of dough loose in your chomper, sticking to your teeth or the top of your mouth. In lieu of your tongue doing its job, one of the trusty fingers has to step up to maneuver the mass to your back teeth for a proper swallow attempt. After that, you're hopeful a slip and slide party is going on back there, so the swallow attempt doesn't result in bread hanging out in your throat. You all know what that feels like. Ug!
Can you tell I'm rambling with glee? My facial area still feels like Joan Rivers' face looks, but I'm sipping milk without coughing, chewing bread without choking, and planning my menu for today...the Bulbar vacation is over!
Wednesday, August 11, 2010
Signed - Hopeful & Exhausted
Coming to you 'live' from spin class..or the human oil change...or treatment.. One week since we last chatted, and guess what? Its been a week full of symptoms. Thats what I get for trying to alter my treatments from 3x a week, to 2x a week. Lesson learned. I'm exhausted from tinkering with the silly mess.
We are just past the 3 month mark with the new drug, so I'm still hopeful this one will work. Hopeful, but not holding my breath. Right now, the pheresis is the one thing that works, and even though it can't prevent the occasional flare of symptoms, it does lessen the magnitude. This past week, I've been dealing with double vision, slow swallow, weak speech and fatigue..nothing new, but its exhausting. I thank God that I am surrounded by folks who understand whats going on and have patience to listen to my horrid speech during weeks like this. The lack of pressure takes such a weight off my shoulders. Ya know? When you can just be yourself, and people get it.
The one thing we haven't really tried is steroids, and we've been avoiding this option. We've not heard much positive about the effects of steroids, aside from the relief they can provide. This sounds odd, doesn't it? From fellow MGers and some of the Drs, I've heard the use of 'roids can really weaken your bones and your internal system/plumbing. This week, I hit the point of wanting the steroids now, but Lee is always able to calm me down, he knows I dont really want to choose this..yet. I dont feel the costs out weight the benefit. I was tired from not being able to eat, drink well, speak much, choking, and being hungry. I get mad when I can't eat...or talk :)
Today is day 5 of what I expect to be a 7 day cycle. Even that isn't always true, but again, I choose to be hopeful.
We are just past the 3 month mark with the new drug, so I'm still hopeful this one will work. Hopeful, but not holding my breath. Right now, the pheresis is the one thing that works, and even though it can't prevent the occasional flare of symptoms, it does lessen the magnitude. This past week, I've been dealing with double vision, slow swallow, weak speech and fatigue..nothing new, but its exhausting. I thank God that I am surrounded by folks who understand whats going on and have patience to listen to my horrid speech during weeks like this. The lack of pressure takes such a weight off my shoulders. Ya know? When you can just be yourself, and people get it.
The one thing we haven't really tried is steroids, and we've been avoiding this option. We've not heard much positive about the effects of steroids, aside from the relief they can provide. This sounds odd, doesn't it? From fellow MGers and some of the Drs, I've heard the use of 'roids can really weaken your bones and your internal system/plumbing. This week, I hit the point of wanting the steroids now, but Lee is always able to calm me down, he knows I dont really want to choose this..yet. I dont feel the costs out weight the benefit. I was tired from not being able to eat, drink well, speak much, choking, and being hungry. I get mad when I can't eat...or talk :)
Today is day 5 of what I expect to be a 7 day cycle. Even that isn't always true, but again, I choose to be hopeful.
Tuesday, August 3, 2010
Hi, Hey, Wassup, Greetings!
Its been a little while since I posted, and mainly because I feel really good!! It scares me to type that out loud. As I've commented before, getting cozy with comfort makes me nervous, but I am grateful none the less.
Nothing really new on the health front. We did have a follow up visit with the Dr in Dallas who specializes in MG-MuSK patients. This visit, we were welcomed with handshakes and a smile. I almost fell over! Maybe on the last visit, we were there before the coffee kicked in. Doesn't really matter, he's super smart and that's why we want to be there. We'll just smile at him regardless... ;)
Again, I seem to be a classic case (his words) and my symptoms are consistent with MuSK MGers (his words again). Its SO nice to be normal sometimes, despite my haminess. Is that a word? It is now. Dallas Dr didn't care much about the developing MS stuff, since this is not his area. He has known MGers who have had MS and treated accordingly. Still, we're focused on the MG for now.
This past week, many people have commented on my speech being 'more like Rachel' and my eyes being bright again. My chew and swallow are strong, which really means I'm talking a lot. I love it! ...that my symptoms are waning, not that I talk a lot. I'll be excited to see how long this spell will last. Maybe the meds are starting to work? Maybe the 2 weeks of 3 treatments made the difference? Maybe the awesomeness is taking over? Frank, thanks for agreeing with me!
Thanks for your fabulous emails/text/calls/etc. Each one is welcomes and appreciated! While we wait to meet again with Dr. Horvit in Austin, we move slow, take social media breaks (sorry Mom), plan a wedding, eat lots and sleep more.
I think we should all take a nap now.
Nothing really new on the health front. We did have a follow up visit with the Dr in Dallas who specializes in MG-MuSK patients. This visit, we were welcomed with handshakes and a smile. I almost fell over! Maybe on the last visit, we were there before the coffee kicked in. Doesn't really matter, he's super smart and that's why we want to be there. We'll just smile at him regardless... ;)
Again, I seem to be a classic case (his words) and my symptoms are consistent with MuSK MGers (his words again). Its SO nice to be normal sometimes, despite my haminess. Is that a word? It is now. Dallas Dr didn't care much about the developing MS stuff, since this is not his area. He has known MGers who have had MS and treated accordingly. Still, we're focused on the MG for now.
This past week, many people have commented on my speech being 'more like Rachel' and my eyes being bright again. My chew and swallow are strong, which really means I'm talking a lot. I love it! ...that my symptoms are waning, not that I talk a lot. I'll be excited to see how long this spell will last. Maybe the meds are starting to work? Maybe the 2 weeks of 3 treatments made the difference? Maybe the awesomeness is taking over? Frank, thanks for agreeing with me!
Thanks for your fabulous emails/text/calls/etc. Each one is welcomes and appreciated! While we wait to meet again with Dr. Horvit in Austin, we move slow, take social media breaks (sorry Mom), plan a wedding, eat lots and sleep more.
I think we should all take a nap now.
Subscribe to:
Posts (Atom)
