Ok, today I'm crabby..yeppers...crabby. The double vision started again last night, my speech is slowed as is my swallow. Had an 'oil change' this morning, so maybe that with some sleep tonight will help, but really??!? I'm over the MG stuff!!!
That felt good...yes, I have these feelings often, but dont really share the darker side, and yet its important to share all aspects of this disease. Heck, this is the same with any condition in life. If its health / relationship / work / kids ..whatever..there are great days and not-so-great days. Despite how much we try to put the positive foot forward and shine the smile, sometimes this is more exhausting that sharing the real stuff. Today, you're getting my real stuff.
I've used a few choice words this morning between God and I, as I was driving with tape on my glasses over my right eye, as I'm choking on water because I'm drinking it too fast or the air in my mouth wasn't balanced, as I'm craving a big pizza but can only manage soup. Ahhhhhhhhhhhhhhh!!!! This #$% bites. I'm tired of it, I'm ready for the meds to work, I'm ready to get this dang catheter outta my chest, I'm ready to sleep on my belly, to float down the river, to swim in a pool, to sleep with my eyes closed. Over it!!
With all that venting, and you're only hearing a small bit of it, I still have that quiet voice in my heart reminding me that God is in all of this. He's with me with I have to drive, as I'm praying the cars away, he's with me when I start to choke and helps me calm my breathing so I can thinking and act as needed, he's with my silly catheter and guiding my hands as we keep the life line clean and infection free. He's with me through all of it, and He's ok that I cuss at him here and there too. He loves it when I get honest with him!
He got an ear full of honest today ;), and thanks for letting me share with you.
Friday, June 25, 2010
Wednesday, June 23, 2010
Ug...trying to get into it, I really am
Ok, I'm having a day. All seats are taken at my pity party for one, no more room in here. No, no, I'm not having a pity party nor is this a cry for help. Just venting and whining, and trying to celebrate too.
We've had quite the month with the art show, MG awareness month, travel, weddings, etc. Lots of good stuff happening. Last week, was a very good week. My body felt strong, and in the 'cycle' that I feel I've identified, it was expected to be a good week. So, we tried doing only 2 treatments. In my highly trained scientific mind, I wanted to see how my body behaved 1.5 months in on the new meds, on 2 treatments, on a 'good week'. Not bad! This week, is expected to begin the rough weeks, and as of yesterday, the symptoms are starting to creep in. My voice has become weak, the swallow is slowing, my eyes feel stretched. However..its not as bad as I have seen it (no pun intended), at this same time, in months past. Hummm....maybe the meds are starting to help?
My head hurts due to the molds right now, so I'm not thinking very clearly, and sipping on soup frustrates me. So I'm wound up as it were, but I'm grasping at the good. I feel good! My body is strong, folks are telling me I have color in my cheeks again, I requested iron after treatment yesterday and this should help my energy, I'm still eating and dont see double.
In light of last week's post, I can't get around or away from this STUPID disease, so lets get into it, right? We've been distributing 'Awareness wristbands' all month, and I LOVE, LOVE, LOVE the response to them. We will see the Neuro tomorrow and report the good, the bad, and all of Momma's research...I mean, our research :). Since I'm working on my iron counts, we might be able to increase the Prograf dosage. Who knows...this is a walking science experiment..grab some popcorn and enjoy the show. All I know is that I really, really want to sit and pout right now because of the frustration, but things could be SO much worse.
Ok, thanks for the pep talk...I needed that. I'm going to finish my soup now and get back to work now.
We've had quite the month with the art show, MG awareness month, travel, weddings, etc. Lots of good stuff happening. Last week, was a very good week. My body felt strong, and in the 'cycle' that I feel I've identified, it was expected to be a good week. So, we tried doing only 2 treatments. In my highly trained scientific mind, I wanted to see how my body behaved 1.5 months in on the new meds, on 2 treatments, on a 'good week'. Not bad! This week, is expected to begin the rough weeks, and as of yesterday, the symptoms are starting to creep in. My voice has become weak, the swallow is slowing, my eyes feel stretched. However..its not as bad as I have seen it (no pun intended), at this same time, in months past. Hummm....maybe the meds are starting to help?
My head hurts due to the molds right now, so I'm not thinking very clearly, and sipping on soup frustrates me. So I'm wound up as it were, but I'm grasping at the good. I feel good! My body is strong, folks are telling me I have color in my cheeks again, I requested iron after treatment yesterday and this should help my energy, I'm still eating and dont see double.
In light of last week's post, I can't get around or away from this STUPID disease, so lets get into it, right? We've been distributing 'Awareness wristbands' all month, and I LOVE, LOVE, LOVE the response to them. We will see the Neuro tomorrow and report the good, the bad, and all of Momma's research...I mean, our research :). Since I'm working on my iron counts, we might be able to increase the Prograf dosage. Who knows...this is a walking science experiment..grab some popcorn and enjoy the show. All I know is that I really, really want to sit and pout right now because of the frustration, but things could be SO much worse.
Ok, thanks for the pep talk...I needed that. I'm going to finish my soup now and get back to work now.
Tuesday, June 15, 2010
Are you getting into it?
I really enjoyed church this past Sunday. We'd missed the prior week due to our trip to Denver..which was beautiful! A dear friend of mine was married, and the simple love was awesome. Sunday's message was about making the most of life's ordeals. A quote the preacher incorporated was borrowed from Outward Bound (excellent program), "If you can't get around it, get into it." This really rang true for me!
Honestly, I've wanted to get around MG since it met me. I felt my life was on the right track, and that my next chapter of fun was just beginning, with the move to Austin just over 2 years ago. ..then wham!..Rachel, meet MG. Hearing the story shared this Sunday, and the quote above, made me smile big. I feel like we've done just this. Can't get around MG at all, can't even dosey doe past it...so we've just gotten into it. What does that mean in your world?
I'm mine..we've become actively involved with our MG support group, helping raise awareness and networking. (For those wearing our awareness bracelets, THANK YOU!!) The local MDA chapter now has a real face for MG, and we're part of their team too. People around us now know more about this disease than they ever wanted to know (because I wont shut up), and this knowledge applies to other autoimmune diseases. This crazy disease has changed my life's pace, taught me a LOT about insurance and hospitals and doctors and blood levels and drug interactions and ...blah, blah, blah....it goes on and on.
You have the same things in your world, right? It might be a speeding ticket, or a child's report card with slipping grades, or an illness, or whatever...We all have life events that we can grow from. This doesn't mean we forget what may have happened, but it does mean we learn from the situation, we can grow, we can share our experience with others and support them through similar events...we can do so much.
Our emotions are real, and shouldn't be denied or ignored. I'm really not a big fan of MG...I would say I resent having it. I really dislike what it has forced me to do! I really don't like the catheter in my chest or the stupid machine that my life is centered around these days. These emotions are real and I own them. I also respect the fact that I am here. Right here. This is mine...and that's ok. I cant run from it, can't hide, can't make it go away, and cant ignore it.
I can't get around it...so I have to get into it!
Honestly, I've wanted to get around MG since it met me. I felt my life was on the right track, and that my next chapter of fun was just beginning, with the move to Austin just over 2 years ago. ..then wham!..Rachel, meet MG. Hearing the story shared this Sunday, and the quote above, made me smile big. I feel like we've done just this. Can't get around MG at all, can't even dosey doe past it...so we've just gotten into it. What does that mean in your world?
I'm mine..we've become actively involved with our MG support group, helping raise awareness and networking. (For those wearing our awareness bracelets, THANK YOU!!) The local MDA chapter now has a real face for MG, and we're part of their team too. People around us now know more about this disease than they ever wanted to know (because I wont shut up), and this knowledge applies to other autoimmune diseases. This crazy disease has changed my life's pace, taught me a LOT about insurance and hospitals and doctors and blood levels and drug interactions and ...blah, blah, blah....it goes on and on.
You have the same things in your world, right? It might be a speeding ticket, or a child's report card with slipping grades, or an illness, or whatever...We all have life events that we can grow from. This doesn't mean we forget what may have happened, but it does mean we learn from the situation, we can grow, we can share our experience with others and support them through similar events...we can do so much.
Our emotions are real, and shouldn't be denied or ignored. I'm really not a big fan of MG...I would say I resent having it. I really dislike what it has forced me to do! I really don't like the catheter in my chest or the stupid machine that my life is centered around these days. These emotions are real and I own them. I also respect the fact that I am here. Right here. This is mine...and that's ok. I cant run from it, can't hide, can't make it go away, and cant ignore it.
I can't get around it...so I have to get into it!
Friday, June 11, 2010
Time to Chew!
Indeed, its time to chew! Yesterday was the first day in 2 weeks, that I could see straight again..yeah baby! With that, the chew swallow is better too. Actually, my chew/swallow started to correct last Thursday, and the vision corrected this Thursday...well, yesterday..and then a week prior...make sense? Makes me dizzy...literally and figuratively. (My coffee is working now).
Everything is cyclical, or so it seems. It's an easy rationalization anyway. I must say, whenever I get comfy with the idea that I've figured something out (this pattern, or that trigger), then things tend to be shaken up. Its almost like the Big Guy is saying ..."Um..its not yours to figure out, but thanks for playing Rachel."
So, I do get nervous to think anything is stable, but I do enjoy the calms. In those times, I realize how much is going on around me, that has nothing to do with me. ;) Its awesome to take a deep breath and see how much good is going on in the world, despite the horrible things we can focus on. Lee had a pretty awesome story make it to press today, and it was a lot of hard work on his part to make it happen. I'm glad my eyes are clear and my voice is strong, so that I can cheer him on, and celebrate this day! Aunt Dot is not feeling well, and needs prayer warriors lifting her up. I'm glad my mind is alert so that I can listen and pray. A dear friend is having test to confirm an autoimmune disease is fighting her. I'm grateful my experience with this, can help me to comfort her.
I'm not sure how to wrap this entry up...I'll just leave you to chew on this... ;)
Everything is cyclical, or so it seems. It's an easy rationalization anyway. I must say, whenever I get comfy with the idea that I've figured something out (this pattern, or that trigger), then things tend to be shaken up. Its almost like the Big Guy is saying ..."Um..its not yours to figure out, but thanks for playing Rachel."
So, I do get nervous to think anything is stable, but I do enjoy the calms. In those times, I realize how much is going on around me, that has nothing to do with me. ;) Its awesome to take a deep breath and see how much good is going on in the world, despite the horrible things we can focus on. Lee had a pretty awesome story make it to press today, and it was a lot of hard work on his part to make it happen. I'm glad my eyes are clear and my voice is strong, so that I can cheer him on, and celebrate this day! Aunt Dot is not feeling well, and needs prayer warriors lifting her up. I'm glad my mind is alert so that I can listen and pray. A dear friend is having test to confirm an autoimmune disease is fighting her. I'm grateful my experience with this, can help me to comfort her.
I'm not sure how to wrap this entry up...I'll just leave you to chew on this... ;)
Friday, June 4, 2010
OH!! One more thing...
..and June is Myasthenia Gravis awareness month!! I encourage you to tell 1 person about this nutty disease..share the knowledge!
Easy come, easy go
Well, dang it all!!! I've been so frustrated this past week, because the symptoms caught up to me again. No, I did nothing crazy and didn't over extend myself (Mom :D). I'm pretty sure than when the Prograf catches up, this shouldn't happen, but it appears the symptom flare ups are related somehow to my menstrual cycle. I can't believe I just typed that word out loud..but we're all adults, right? I've chatted with several women around the globe via message boards, and it turns out their MG symptoms also flare around their cycle too! Wow, didn't think about it before, but suppose it makes sense. Symptoms flare with stress to the body...I'm not saying this 'causes' MG or the symptoms, I'm suggesting that symptoms are magnified during this natural wonder.
Blah, blah, blah...anyway... This past week, my speech has been poor, my body weak, my eyes crossed and my swallow very slow. Today is day 1 of feeling better! Yeppers, I was excited to wake up and swallow water with out issue! Then take pills without problem, and the next thing on my radar was a McGridddle from McD's. I couldnt' help myself...its time to eat!!!
Over the past week, the small amount of weight I'd been so excited to put on, fell off...."so long, farewell...la de dah de dah." We'll see how much I can put on in 2 weeks and then see if symptoms take over again, for 2 weeks after that. UG.... One month in to the Prograf..we definitely have a good baseline to start from...bring it on!!
Happy Birthday to Aunt Al today!! Truly and angel on this earth, Aunt Al carries so much, for so many, and so many of us have no idea. I'm proud to know you and call ya my Aunt Al!
Ok, I'm working on the second half of this McGriddle...more later....
Blah, blah, blah...anyway... This past week, my speech has been poor, my body weak, my eyes crossed and my swallow very slow. Today is day 1 of feeling better! Yeppers, I was excited to wake up and swallow water with out issue! Then take pills without problem, and the next thing on my radar was a McGridddle from McD's. I couldnt' help myself...its time to eat!!!
Over the past week, the small amount of weight I'd been so excited to put on, fell off...."so long, farewell...la de dah de dah." We'll see how much I can put on in 2 weeks and then see if symptoms take over again, for 2 weeks after that. UG.... One month in to the Prograf..we definitely have a good baseline to start from...bring it on!!
Happy Birthday to Aunt Al today!! Truly and angel on this earth, Aunt Al carries so much, for so many, and so many of us have no idea. I'm proud to know you and call ya my Aunt Al!
Ok, I'm working on the second half of this McGriddle...more later....
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