I don't know if you know this or have figured this out by now, but I have a very type A personality. I want things done correctly, in an organized fashion, on the first time, as fast as they can get done. I've had planners with color coded pens to give each thing in my life a different color so I knew what was what for as long as I can remember. I don't go anywhere without my planner. My whole life has been planned out since I was pretty much in elementary school. I would go to college, work in the summers, get a job as soon as I graduated, budget my money, and have like 3.5 kids with a big dream house with a white picket fence. I knew I was probably going to be a special education teacher, or at least some kind of teacher.
When I started teaching my life was planned down to the second all day. Between teaching with no planning period, being on committees, being a track coach, and going to school online to get my masters degree I had to have my whole life planned, basically.
I knew the value of planning. I mean there were even Bible verses about planning. But what I wasn't understanding about those Bible verses was that they were not talking about me planning, but God planning my life for me. For example, in Proverbs 16:3 it says "Commit to the Lord whatever you do, and He will establish your plans." So to me that says as long as I'm committed to the Lord God I get whatever my heart desires. Right? Wrong.
You see this type A personality girl who had her whole life together but didn't realize it until she lost it all was about to be taken on a whirl wind adventure over several years of what God had planned for her and she in no way thought that this could possibly be God's plan for her.
It all started at my first hospital admittance on September 11, 2009; 4 years, 7 months, and 22 days or 1695 days ago. There I was diagnosed with Celiac Disease and Ulcerative Colitis. I lost the ability to eat all my favorite foods and found out that I would spend the rest of my life having very not so fun testing done at regular intervals and I could at one point lose my colon because of it.
Then the next year I had just lost my job as a middle school autism teacher due to some health circumstances and other things. Then because of the stress of not having a job and not knowing what my future held, I went into a severe flare of my colitis. I was admitted to the hospital on September 13, 2010 for a total period of 13 days. This was 3 years, 7 months, and 20 days ago or 1328 years ago. While I was in the hospital all this time I came very close to dying a couple of times due to my critically low potassium levels and not being able to hold any nutrition down.
Then 2 weeks after I was released on October 22, 2010; or 3 years, 6 months, and 11 days ago or 1289 days ago; I thought my life was over. I was being forced to move across the country to live in Indiana with my mom since I couldn't take care of myself any longer and I had no income what so ever. This was the hardest day of my life. To leave everyone I loved so much behind, my life behind, my church behind, my independence behind.
For the first couple of months I lived her I just focused on getting some strength back. But then on January 6th, 2011; or 3 years, 3 months, and 27 days later or 1213 days later I started back at college at Indiana State University to do my pre-requisites for the dietetics program and I was admitted that spring to the program. I was doing well in the program academically and with clinicals. But my dysautonomia was getting worse and it was harder to get to school every day and making it through clinicals.
July 1st of 2013; which was 10 months and 2 days ago or 306 days ago, I finally met with a cardiologist in Indiana who was actually a dysautonomia specialist. He finally got some of my meds straightened out and started me on weekly saline infusions and I haven't passed out since I started seeing him but 3 times and those were both on weeks I couldn't get infusions.
On September 23, 2013; or 7 months and 10 days ago or 222 days ago I was admitted to IU University Hospital for a week and had just about every test under the sun run on me. I also got a trial NJ tube to see if that would stop the passing out spells I was having with eating, and it did. The only problem with this is I was missing a whole week of school which was not allowed.
Then I had to miss 3 more days of school the next week because I had to get my permanent surgical J tube palced on October 2nd; 7 months and 1 day ago or 213 days ago. At the same time they placed my J tube they also did full thickness stomach muscle and small intestine biopsies, a thigh muscle biopsy, and placed a port in.
Obviously, that was a pretty big procedure so I spent several days in the hospital then was supposed to be on bedrest for 6 weeks and already knew I was going to have to change my tube out at some point soon too, which meant another surgery soon. On October 11, 2013 or 6 months and 22 days or 204 total days ago the inevitable came. I knew it was coming. I don't know why I was so shocked when it actually happened. At this point I had been out of school for a month and we are only allowed to miss 2 days before being booted from the program. But it came. I got an email from the professors saying I needed to withdrawal and try again next semester unless I could come back by Monday. I still needed 2 more weeks of bed rest and still needed a second surgery so I knew this would be impossible, so I dropped out of the program in the last semester of classes. The semester right before clinicals. And it killed me. I had prided myself on being so sick and never missing a day of class, and now this. And then come to find out I didn't even need the small intestine and stomach muscle biopsies because my doc was using them for research that I didn't even consent too and that was why my recovery was taking so long in the first place, not because of the tube. So my life, in that instant completely changed again. I thought I was gonna make it. I thought I was going to make it through without delays. I thought I was going to get my masters degree without incident. But that wasn't in God's plans apparently.
Within 2 weeks of dropping out on October 25, 2013 or 6 months and 8 days or 190 days ago I was admitted to University again for complications. This time I stayed for 9 days. I knew if I hadn't dropped out 2 weeks earlier they would have been kicking me out when I was in the hospital. And that would not have been fun at all. So that was a small answer to prayer.
My point to this whole long stroll down time stamp memory lane is that 10.5 hours ago, I was supposed to be graduating. I was supposed to be walking or wheeling or crawling across the stage at the Hulman Center to get my diploma for my masters degree. That is what I was supposed to be doing today instead of laying in my recliner semi-high on all the drugs that I'm on and then going to big lots to buy pretty spring flower LED lights to decorate my IV pole with. Or talking to people in support group after support group saying I so feel what you're feeling right now, especially since most of the people aren't feeling good things right now. That's what I was supposed to be doing today. I was supposed to be having the best day of my life. But instead I've spent 90% of it in my recliner watching a Law and Order: Criminal Intent marathon in between naps that I've been sneaking.
Now don't get me wrong, I have good days, and I have bad days. Today is just one of those days that seems so bad. Like something that I had no control over cost me so much. So much time. So much schooling. So much energy. Like why can't I be done by now. And I feel the worst for my friends that did graduate because they keep inviting me to do things with them and their families and I just can't. Because while they're all going out to restaurants celebrating graduation I'm sitting in my recliner hooked up to my feeding tube pump and wondering if I will be able to finish this next time or if some weird health thing will jump up and make me quit again. I just can't emotionally handle it and be around them right now. And that makes me hurt too. Because that's not fair to them. But that's where I am. I just can't do it. Not right now. I really am proud of them. But I'm still in that place of my mind that says "it's just not fair, it's not like I asked to be sick, I should be graduating too." So that's where I am today. I am sad. Because I made plans. And God said wait. And when God says wait, instead of yes, or no, I believe that is the hardest answer of all. Because you're not completely shot down from your idea, but you can't have it right now. You have to wait for God's perfect timing. And sometimes that takes a long, long time. And that is what kills me. I'm not a good waiter.
Right now though I am getting pleasure out of helping people whenever I can in the support groups and sharing what knowledge I do have to help them get the information they need so they can advocate for themselves. Maybe in a way this is preparing me to be a better dietitian one day. I got this sweet message from a woman I was chatting with last night when I was telling her a little about my story, and about how I could help some because I was a dietetics student with some of the food related issues and she was going on about how inspirational I was and was doing so good for someone who had been through what I had been through and still finding a way to have purpose by offering advice to people and being supportive of them in groups. And that makes it all worth it folks.
So I'm still here playing the waiting game. Waiting to finish school. Waiting to get better. But I have a new date in mind now. May 2nd, 2015 which is in 11 months and 29 days or 364 days away!!! That will be my graduation date! Finally!
When I started teaching my life was planned down to the second all day. Between teaching with no planning period, being on committees, being a track coach, and going to school online to get my masters degree I had to have my whole life planned, basically.
I knew the value of planning. I mean there were even Bible verses about planning. But what I wasn't understanding about those Bible verses was that they were not talking about me planning, but God planning my life for me. For example, in Proverbs 16:3 it says "Commit to the Lord whatever you do, and He will establish your plans." So to me that says as long as I'm committed to the Lord God I get whatever my heart desires. Right? Wrong.
You see this type A personality girl who had her whole life together but didn't realize it until she lost it all was about to be taken on a whirl wind adventure over several years of what God had planned for her and she in no way thought that this could possibly be God's plan for her.
It all started at my first hospital admittance on September 11, 2009; 4 years, 7 months, and 22 days or 1695 days ago. There I was diagnosed with Celiac Disease and Ulcerative Colitis. I lost the ability to eat all my favorite foods and found out that I would spend the rest of my life having very not so fun testing done at regular intervals and I could at one point lose my colon because of it.
Then the next year I had just lost my job as a middle school autism teacher due to some health circumstances and other things. Then because of the stress of not having a job and not knowing what my future held, I went into a severe flare of my colitis. I was admitted to the hospital on September 13, 2010 for a total period of 13 days. This was 3 years, 7 months, and 20 days ago or 1328 years ago. While I was in the hospital all this time I came very close to dying a couple of times due to my critically low potassium levels and not being able to hold any nutrition down.
Then 2 weeks after I was released on October 22, 2010; or 3 years, 6 months, and 11 days ago or 1289 days ago; I thought my life was over. I was being forced to move across the country to live in Indiana with my mom since I couldn't take care of myself any longer and I had no income what so ever. This was the hardest day of my life. To leave everyone I loved so much behind, my life behind, my church behind, my independence behind.
For the first couple of months I lived her I just focused on getting some strength back. But then on January 6th, 2011; or 3 years, 3 months, and 27 days later or 1213 days later I started back at college at Indiana State University to do my pre-requisites for the dietetics program and I was admitted that spring to the program. I was doing well in the program academically and with clinicals. But my dysautonomia was getting worse and it was harder to get to school every day and making it through clinicals.
July 1st of 2013; which was 10 months and 2 days ago or 306 days ago, I finally met with a cardiologist in Indiana who was actually a dysautonomia specialist. He finally got some of my meds straightened out and started me on weekly saline infusions and I haven't passed out since I started seeing him but 3 times and those were both on weeks I couldn't get infusions.
On September 23, 2013; or 7 months and 10 days ago or 222 days ago I was admitted to IU University Hospital for a week and had just about every test under the sun run on me. I also got a trial NJ tube to see if that would stop the passing out spells I was having with eating, and it did. The only problem with this is I was missing a whole week of school which was not allowed.
Then I had to miss 3 more days of school the next week because I had to get my permanent surgical J tube palced on October 2nd; 7 months and 1 day ago or 213 days ago. At the same time they placed my J tube they also did full thickness stomach muscle and small intestine biopsies, a thigh muscle biopsy, and placed a port in.
Obviously, that was a pretty big procedure so I spent several days in the hospital then was supposed to be on bedrest for 6 weeks and already knew I was going to have to change my tube out at some point soon too, which meant another surgery soon. On October 11, 2013 or 6 months and 22 days or 204 total days ago the inevitable came. I knew it was coming. I don't know why I was so shocked when it actually happened. At this point I had been out of school for a month and we are only allowed to miss 2 days before being booted from the program. But it came. I got an email from the professors saying I needed to withdrawal and try again next semester unless I could come back by Monday. I still needed 2 more weeks of bed rest and still needed a second surgery so I knew this would be impossible, so I dropped out of the program in the last semester of classes. The semester right before clinicals. And it killed me. I had prided myself on being so sick and never missing a day of class, and now this. And then come to find out I didn't even need the small intestine and stomach muscle biopsies because my doc was using them for research that I didn't even consent too and that was why my recovery was taking so long in the first place, not because of the tube. So my life, in that instant completely changed again. I thought I was gonna make it. I thought I was going to make it through without delays. I thought I was going to get my masters degree without incident. But that wasn't in God's plans apparently.
Within 2 weeks of dropping out on October 25, 2013 or 6 months and 8 days or 190 days ago I was admitted to University again for complications. This time I stayed for 9 days. I knew if I hadn't dropped out 2 weeks earlier they would have been kicking me out when I was in the hospital. And that would not have been fun at all. So that was a small answer to prayer.
My point to this whole long stroll down time stamp memory lane is that 10.5 hours ago, I was supposed to be graduating. I was supposed to be walking or wheeling or crawling across the stage at the Hulman Center to get my diploma for my masters degree. That is what I was supposed to be doing today instead of laying in my recliner semi-high on all the drugs that I'm on and then going to big lots to buy pretty spring flower LED lights to decorate my IV pole with. Or talking to people in support group after support group saying I so feel what you're feeling right now, especially since most of the people aren't feeling good things right now. That's what I was supposed to be doing today. I was supposed to be having the best day of my life. But instead I've spent 90% of it in my recliner watching a Law and Order: Criminal Intent marathon in between naps that I've been sneaking.
Now don't get me wrong, I have good days, and I have bad days. Today is just one of those days that seems so bad. Like something that I had no control over cost me so much. So much time. So much schooling. So much energy. Like why can't I be done by now. And I feel the worst for my friends that did graduate because they keep inviting me to do things with them and their families and I just can't. Because while they're all going out to restaurants celebrating graduation I'm sitting in my recliner hooked up to my feeding tube pump and wondering if I will be able to finish this next time or if some weird health thing will jump up and make me quit again. I just can't emotionally handle it and be around them right now. And that makes me hurt too. Because that's not fair to them. But that's where I am. I just can't do it. Not right now. I really am proud of them. But I'm still in that place of my mind that says "it's just not fair, it's not like I asked to be sick, I should be graduating too." So that's where I am today. I am sad. Because I made plans. And God said wait. And when God says wait, instead of yes, or no, I believe that is the hardest answer of all. Because you're not completely shot down from your idea, but you can't have it right now. You have to wait for God's perfect timing. And sometimes that takes a long, long time. And that is what kills me. I'm not a good waiter.
Right now though I am getting pleasure out of helping people whenever I can in the support groups and sharing what knowledge I do have to help them get the information they need so they can advocate for themselves. Maybe in a way this is preparing me to be a better dietitian one day. I got this sweet message from a woman I was chatting with last night when I was telling her a little about my story, and about how I could help some because I was a dietetics student with some of the food related issues and she was going on about how inspirational I was and was doing so good for someone who had been through what I had been through and still finding a way to have purpose by offering advice to people and being supportive of them in groups. And that makes it all worth it folks.
So I'm still here playing the waiting game. Waiting to finish school. Waiting to get better. But I have a new date in mind now. May 2nd, 2015 which is in 11 months and 29 days or 364 days away!!! That will be my graduation date! Finally!
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