Hi everyone! I have no idea why I'm in such a great mood... ok I kind of know. I'm not going to blog about that part yet though. Hey I rhymed. Haha. The good news is it really seems like that part of me that's been missing since I first got sick in 2010, it's back! I've got this pep to me that I used to.... only problem is I can't go dance it out... you know, some Hairbangers Ball or old school dance parties with disco balls. A-mazing. haha Anyways, getting to my point here...
Again, God told me to write. I said, later. He said, now. But, this isn't going to be a religious post or anything... just something I'm being told to write about. So, again, maybe there is someone out there I am writing these posts for, maybe a different person every time, or maybe it's purely just for me. Who knows.
This morning, I think it was this morning at least... I woke up and was thinking back in life. What do I remember about grade school (for those who called it something different, grade school means K-8)? The moments that came to mind were as follows: sports day, free time at the park, walk-a-thons, playing kick ball at recess, the lunch food that I actually liked when no one else did, heads down thumbs up, math around the world, playing kick the can, sleep overs, basketball, cheerleading, softball, the first boy-girl birthday parties, AOL, making videos for class...
What do I remember about high school? Sleepovers, trips to Spencers, my amazing hotel parties LOL, roaming the halls doing weird things just to make other people confused or laugh, decorating lockers in the weirdest way ever, dancing while running cross country, dances and always meeting or hanging out at my house before and/or after, hanging out in Beverly, taco bell...
What do I remember about college? My sorority sisters, the night the music died, throwing parties with 30 people in our small dorm room, the karaoke machine, yelling things out the window then hiding, Greek Week, dancing in the frats, video taping everything, being super involved in campus organizations, movie/pizza nights, ALPACAS!!!....
I'll stop there. My point is, when you look back in life or think about old times, you rarely remember the bad parts. Everything I listed makes me smile, makes me laugh. There were SO many good times in life. So that brings me to this. Whatever you are going through in the present moment, if it's not enjoyable, pleasant or easy, it will pass. And you will come to another one of those great moments to remember. If you're facing a difficult decision, or at a fork in the road and don't know which way to go, look up. And then carry on carry on.
I realize at the end of my post here this was not much more than my own reminiscing. But I'm sure there are some who are reading this and share these memories/moments with me... so to all of you, thanks for making good memories with me. The future is filled with more to come. I have an amazing outlook on my future right now and I know one day years years away, I will look back and not remember these hard times with my health but instead the enjoyable times shared with loved ones.
God bless.
Wednesday, July 24, 2013
Monday, July 22, 2013
Disabled or Enabled
I'm not feeling good at all, haven't been and been declining in the last week. Not sure if it's MG, still the reaction to the prescription, or something else. A few days back it was my arms, hands, fingers and could barely type. Now it's my legs not really working at all. Anyways, I felt God telling me to write on a topic, so I'm listening to Him and writing.
When diagnosed with a serious chronic illness, many find themselves categorized under "disabled." It's true we have less physical abilities than we had before... many less. It's true we cannot physically do what the majority of society can do. It's true that we may need to use a handicap placard, wheel chair or other assistive devices. It's true that our lives have completely changed.
But we are looking at once sense of life here- the physical sense, worldly in fashion. In that sense, we are disabled. But are we truly disabled? When I say truly, Jesus is truth, so in the eyes of Jesus are we disabled? I don't believe so. In fact, I believe some of us actually become enabled... enabled with the Holy Spirit. That's what happened to me.
Everything is spoken about in context. The context of disability is related to physical. But if we change the context, perhaps many are disabled and few obtain the saving grace in becoming enabled.
Don't look at yourself as a body. Look at yourself as a soul with the gift of the Spirit. When you make that change, and separation in a sense, having a "disability" becomes, dare I say, easier. Your body becomes your job, to take care of and not quit. But YOU are your soul with the gift of the Spirit. Many won't make the separation or even understand the possibility of one. Many will focus strictly on the physical sense, the body. They will bring you down, live entirely in the worldly limits. But deep down inside you know the truth, the real life. Stay in that mindset. Stay positive, stay focused, and stay close to God guiding you. Take care of your body, but don't let it limit you.
Get outside of that box. I'm certain there are at least a few who read "don't let it limit you" and thought ok get out there, get a job or physically do more. Nope. I do not mean push yourself. We with MG know that is the worst thing we can do. But allow your soul to be redeemed. (I just looked that up to make sure I wasn't way off in what I just said as I didn't know- and I quote Psalms 49:15 But God will redeem my soul from the power of the grave: for he shall receive me. End quote. It's things like this that make me know I am writing in the Spirit and not the flesh because I did not know that verse before now.)
Everything is within context. What context are you living in? Worldly, in the flesh- I am disabled. In the Spirit- I am enabled. My wish for all is that you all become enabled. Allow it to happen. Give up preconceived notions, give up things, give up restrictions, give it all up to God and He will give it all to you.
This is more of a post for my other blog, so maybe I'll paste it into there too. But I was told to write it in this one, so I hope there is someone out there reading this who needs to hear this message. After all, I am a vessel for God. Let His message be delivered.
Love to all. And asking for prayers for my health and for my day, and let's just say for this whole week as it's not an easy one. Thank you!
When diagnosed with a serious chronic illness, many find themselves categorized under "disabled." It's true we have less physical abilities than we had before... many less. It's true we cannot physically do what the majority of society can do. It's true that we may need to use a handicap placard, wheel chair or other assistive devices. It's true that our lives have completely changed.
But we are looking at once sense of life here- the physical sense, worldly in fashion. In that sense, we are disabled. But are we truly disabled? When I say truly, Jesus is truth, so in the eyes of Jesus are we disabled? I don't believe so. In fact, I believe some of us actually become enabled... enabled with the Holy Spirit. That's what happened to me.
Everything is spoken about in context. The context of disability is related to physical. But if we change the context, perhaps many are disabled and few obtain the saving grace in becoming enabled.
Don't look at yourself as a body. Look at yourself as a soul with the gift of the Spirit. When you make that change, and separation in a sense, having a "disability" becomes, dare I say, easier. Your body becomes your job, to take care of and not quit. But YOU are your soul with the gift of the Spirit. Many won't make the separation or even understand the possibility of one. Many will focus strictly on the physical sense, the body. They will bring you down, live entirely in the worldly limits. But deep down inside you know the truth, the real life. Stay in that mindset. Stay positive, stay focused, and stay close to God guiding you. Take care of your body, but don't let it limit you.
Get outside of that box. I'm certain there are at least a few who read "don't let it limit you" and thought ok get out there, get a job or physically do more. Nope. I do not mean push yourself. We with MG know that is the worst thing we can do. But allow your soul to be redeemed. (I just looked that up to make sure I wasn't way off in what I just said as I didn't know- and I quote Psalms 49:15 But God will redeem my soul from the power of the grave: for he shall receive me. End quote. It's things like this that make me know I am writing in the Spirit and not the flesh because I did not know that verse before now.)
Everything is within context. What context are you living in? Worldly, in the flesh- I am disabled. In the Spirit- I am enabled. My wish for all is that you all become enabled. Allow it to happen. Give up preconceived notions, give up things, give up restrictions, give it all up to God and He will give it all to you.
This is more of a post for my other blog, so maybe I'll paste it into there too. But I was told to write it in this one, so I hope there is someone out there reading this who needs to hear this message. After all, I am a vessel for God. Let His message be delivered.
Love to all. And asking for prayers for my health and for my day, and let's just say for this whole week as it's not an easy one. Thank you!
Sunday, July 14, 2013
Need not impress
Hello hello!
I'm doing pretty well not letting what others think/say about me affect me. As long as I'm doing what's right in the eyes of God I feel that's what matters. However, for the purpose of awareness I'm going to speak on the topic of others and their affect on MGers.
I used to think I was realistic, laid it all out there, the facts. The facts weren't so great, my health is not so great. How others responded to this was by telling me I'm being negative, not seeing the positive. Easy for someone without many or any health issues or other serious issues in life to say. I know because I used to be there.
Now, while I speak the facts, I feel I do so in a much more positive way. I'm definitely a more positive person. You would think those who used to tell me I was being too negative would like this, but no. Instead they are the same ones who judge that I must be better since I'm more positive about it and thus why don't you go get a job, etc.
I've come to the conclusion there are just some people you can NEVER win with. Some people just don't want you to be happy, even if they don't realize it or admit it. Again, if I'm striving to live up to what God wants for me, I need not impress any human being. It's not a race, there's not a winner, so I'm not going to compete with you. Of course though when that support is lacking, or worse yet an argumentative force coming against me, it definitely makes it harder and makes my MG worse.
So here's the deal. I'm not any better in regards to my MG. In fact, this may be the worst I've ever been consistently outside of my times in the hospital. However, my attitude and outlook about it is the best it has ever been. How is that possible? Well God is my strength.
Have you ever lifted weights until your arms felt dead. Well take that feeling and then add some heavy wrist weights to you after that workout. That's how my arms feel when I'm trying to do something as simple as wash my hair. I bring my laptop into bed so that I can type with my arms rested flat. Have you ever ran a marathon, half marathon, cross country, anything that tired you out? Well take that feeling and then add the feeling a toddler has when they are first learning to walk. That's how my legs feel after walking for about 5 minutes. Have you ever had an elephant sit on your chest? No? Me neither. But that's how I correlate the feeling I have when trying to breathe- yes, trying to breathe, because though it's supposed to happen naturally it's an effort for anyone with MG. Have you ever been on a cruise ship? That's how my coordination and eyes feel unable to steady my focus or maintain balance for a long time. I could go on but I'm sure you get the point.
So if you know someone with MG (I'm thinking you do if you're reading this :) ) or any other chronic illness, try not to judge. Try not to force your opinion about how they should live their life unless they ask. Try to put yourself in their shoes and understand how much they are going through and compared to life as they used to know it life is very hard. Try to look at the positive like you tell them to do. See how they are getting through it and getting through it with a smile. Focus on the positive with them. Ask how you can help. Be of support, not devil's advocate. Show you care. Show you want to understand. Just love love love. Show your love.
I feel this post was a little bland. Oh well. Need not impress, only inform. :)
Friday, July 5, 2013
1st time in 9 months
Guess what? For the first time in 9 months, I drove!!! Any MGer reading this will completely understand my excitement about that. Everyone else, let me explain.
In October 2012 I had an exasperation of MG which resulted in a hospital stay of a month and a half. I didn't feel much better and couldn't do much of anything on my own. I improved a little but I then returned to Chicago from San Antonio and thus started the setting up of surgery. It was supposed to happen fairly quickly but it got postponed. So then I was in the hospital another month and a half March through all of April for the plasmapheresis, thymectomy and complication of pulmonary embolism. I've been out of the hospital 2 months and feel about the same that I did going into the hospital in March.
The biggest reason for not driving up until now is my MG of course, the weakness. Unless you have it you'll never really understand how rapidly someone with MG goes weak and how suddenly without notice it can come on. 1 that's a slightly scary concern being in a car. and 2 driving somewhere means I need to walk because I can't take the wheel chair myself (I cannot lift it in/out of the car and I cannot push myself in it as MG is also arms just as bad sometimes worse) and I cannot walk far. This presents a problem.
But after being so dependent on others for so long I just went for it today. My mom said she was going to the grocery store. I bounced into the room and said "Show me how to use your car, I'm going to drive." and that I did. Probably the best way to do it to not think twice and back out. Crazy how driving comes back to you like you just did it yesterday. Though my mom looked about as terrified as can be LOL. She shouldn't... I drive more like an old lady than probably anyone she knows. She even got into the seat and commented that I have it closer to the stearing wheel than she does when she is shorter than I am haha. Knock on wood for successful grandma driving, never had a ticket or even been pulled over! Really, knock on wood, don't want to ruin my streak.
Anyways, back to my story. She only had to get one thing and I wanted to get one thing so I decided to go in even though we didn't have the wheel chair. Well by the time I got back to the car I was out of breath and extremely fatigued- that's MG for you. So she drove home. This explains why I can't really drive. But at least now I know I can drive a short distance to do something very quick like pick up food in a drive through (how wonderful ay?) or maybe Walgreens/another very small store. But it's something, it's a start! I'll still pray my MG improves so I can do more!
You know what I want? I want to be able to hike again, to play basketball again, to run again, to draw again without doing so at 5 minute intervals because my arms get tired, to make plans without knowing the strong possibility of not being able to stick to them, to shop on my own, to have the energy I used to have. But we don't always get what we want, so we have to be happy with what we already have. And happy I am with my 5 minutes of driving! I'm now on the road to recovery... literally... ha ha bad joke.
I was going to talk on another topic but then this came up and I talk too much so I'll leave it with just that today. If anything it gives a little more insight into a life with MG. Life is different but you really start to value every little thing much much more. Thank you God for all You have given me!
In October 2012 I had an exasperation of MG which resulted in a hospital stay of a month and a half. I didn't feel much better and couldn't do much of anything on my own. I improved a little but I then returned to Chicago from San Antonio and thus started the setting up of surgery. It was supposed to happen fairly quickly but it got postponed. So then I was in the hospital another month and a half March through all of April for the plasmapheresis, thymectomy and complication of pulmonary embolism. I've been out of the hospital 2 months and feel about the same that I did going into the hospital in March.
The biggest reason for not driving up until now is my MG of course, the weakness. Unless you have it you'll never really understand how rapidly someone with MG goes weak and how suddenly without notice it can come on. 1 that's a slightly scary concern being in a car. and 2 driving somewhere means I need to walk because I can't take the wheel chair myself (I cannot lift it in/out of the car and I cannot push myself in it as MG is also arms just as bad sometimes worse) and I cannot walk far. This presents a problem.
But after being so dependent on others for so long I just went for it today. My mom said she was going to the grocery store. I bounced into the room and said "Show me how to use your car, I'm going to drive." and that I did. Probably the best way to do it to not think twice and back out. Crazy how driving comes back to you like you just did it yesterday. Though my mom looked about as terrified as can be LOL. She shouldn't... I drive more like an old lady than probably anyone she knows. She even got into the seat and commented that I have it closer to the stearing wheel than she does when she is shorter than I am haha. Knock on wood for successful grandma driving, never had a ticket or even been pulled over! Really, knock on wood, don't want to ruin my streak.
Anyways, back to my story. She only had to get one thing and I wanted to get one thing so I decided to go in even though we didn't have the wheel chair. Well by the time I got back to the car I was out of breath and extremely fatigued- that's MG for you. So she drove home. This explains why I can't really drive. But at least now I know I can drive a short distance to do something very quick like pick up food in a drive through (how wonderful ay?) or maybe Walgreens/another very small store. But it's something, it's a start! I'll still pray my MG improves so I can do more!
You know what I want? I want to be able to hike again, to play basketball again, to run again, to draw again without doing so at 5 minute intervals because my arms get tired, to make plans without knowing the strong possibility of not being able to stick to them, to shop on my own, to have the energy I used to have. But we don't always get what we want, so we have to be happy with what we already have. And happy I am with my 5 minutes of driving! I'm now on the road to recovery... literally... ha ha bad joke.
I was going to talk on another topic but then this came up and I talk too much so I'll leave it with just that today. If anything it gives a little more insight into a life with MG. Life is different but you really start to value every little thing much much more. Thank you God for all You have given me!
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