I am a planner. Big time. When I get something stuck in my head that isn't happening right now, I plan everything I can about how I want it to go.
One of the problems I've been trying to plan around in my impending chemotherapy or stem cell transplant. See, I want to go to school, but out of the classes I need to take for a degree in digital design, almost all of them are in-person and whichever medical treatment I go with, my immune system will be compromised and I'm thinking that being in a college classroom would be a big mistake until I'm strong again. So I've been exploring my options and looking at the course availability over the summer and fall of this year.
The local community college has a large number of courses available in an online format. They also have a certificate in web development. While it's a subject that I know little to nothing about, I find that interesting in and of itself. I'm an analytical person and the challenge of facing a wholly new subject is pretty exciting. It would also be a good pairing with the digital design degree, allowing me to branch out into web page design. A major plus about the certificate program is that about half of the courses that I would need to complete are available online. This would mean that by combining the two programs I could take classes solely online until the end of 2009. A huge relief for my organizational mind.
So I've been online for the last few days figuring out what that schedule would look like and how it would all work out. When I was working toward my first A.S., I was taking four classes per semester and working 35 hours per week. I figure that if I'm doing all of my work from home, I should be able to manage four to five classes per semester and since they're online I'll be able to keep up with my studies from a hospital bed, especially since I'll have so much down-time on my hands.
Right now I'm waiting on word from my adviser at the college. They can't grant me any financial aid until I get my program switched from general studies, so I'm waiting for someone to switch that and then to find out what kind of aid package they can offer me. My first time through this, my parents and I made little enough money that my entire A.S. was paid for through grants from the state. Now, I have absolutely no income, so I'm hopeful that I can get grants again. I'm just anxious to know. Registration for the summer and fall semesters starts on March 9th, but tuition isn't due until April 28th, so I can just register before I have any answer and then wait for a decision. It's both nerve-wracking and exciting. I really hope that I'm able to go back. I do so little physically right now and it would be so nice to feel like I'm achieving something again. If I can start this summer and if I'm well enough by next spring to go to school in person, I'll be able to graduate in May 2011 and if I'm planning to go into business for myself I should be able to start working on that well before I actually graduate.
Also on the exciting and hopeful front, I'm going to see the new pulmonologist next Thursday to find out if I can have the transplant. I'm really amped up about it. I really hope that she agrees with me and everyone else in my life that this is the way to go. I want it so bad that I've been dreaming about it. It's going to be weird. I've been reading a book about autologous stem cell transplant and it certainly isn't going to be easy. I'm still trying to think about the not-so-bad side effects and the end result instead of focusing on the painful, life threatening side effects and complications that could arise. It's great to have so much support around me, too. So far no one has told me that it sounds like a bad idea or questioned why I would be so anxious to risk my life in this process. They all seem to understand that I would rather die trying to reclaim my life than to spend the rest of my life in the uncertain, sick, unfulfilling body.
Lots of hope this week.
BF's mom is in the hospital again, but she's doing much better than she was last week. There were a couple of days there where we didn't know what we were going to do. Her mental status had severely deteriorated; she wasn't able to help take care of herself, she didn't know when or where she was, and she wasn't recognizing people who she sees all of the time. When we went ot visit her yesterday it was like seeing a wholly different person. She's eating again and despite some mild confusion, she's nearly her old self. Of course she's still sick and we have no idea how long this will last. We're trying to figure out what the best option would be for her care. We would love to have her come home with us, as was the original plan, but things have gone downhill so very fast that neither BF or I are sure that we can give her adequate care in our home. We found another option that's pretty great though; there's a great local hospice that is so different from a nursing home and has a great philosophy of care just a few minutes away from where we're living. For now we're not making any decisions. She's going to enter a nursing facillity for a few weeks of physical therapy and at some point during that period we're going to evaluate where she stands and decide where she can get the care that she needs.
I'll check back in soon. For now, it's 4 am and I should probably sleep.
2.27.2009
2.18.2009
9,131 Days
I'm twenty-five today.
Birthdays have never been much of a big deal for me. Not since I was a kid anyway. Dinner with family or a few close friends. No parties, no big fuss. I don't like gift-centered days in general. They make me uncomfortable. My brother and I were talking about materialism the other day and how little we both care about stuff. Maybe it comes from growing up at the lower end of the economic spectrum. Maybe it comes from the lack of emphasis on posessions in our parents' homes. I think that most of it comes from how people centric our family is. No one ever pushed us to reject things, but the people in our lives and the experiences that we shared were always so much more important.
I have to say, I think it's a pretty nice way to live. I get far more out of giving gifts than receiving them and when I do receive them I often get more enjoyment out of the sentiment behind the gift than the object itself.
I have been searching for some direction for the last few months. Since I finished my degree I've felt incredibly unproductive. I've also been searching for a career that I can build without being hindered by my illness. After all, even if the bone marrow transplant happens and is successful, I still may never be able to teach. The pulmonary hypertension might not be stopped by the BMT and there will always be a chance for my MCTD to reccur and knock me off my feet again. So with all of this in mind I've been examing my interests, talents, and jobs that I could do from home whether I am sick or not. After doing a lot of self-examination and consulting with my friends and family, I've decided to go back to school to get my A.S. in Digital Design. I've always been artistic. I was never dedicated enough to really develop that talent, but I did some pretty good work in high school and I really enjoyed it. Since high school I've done some work toying around with text and graphic layout and design for more crafty-type things and it's come together pretty well. More than that though, it will give me the ability to create something tangible, which I find extremely fulfilling, and it's something that I can either do for someone else from my home or even use to start a home based business.
So I'm planning to start taking classes at the local community college starting this summer.
But tonight when we got home from a long day of hauling stuff from the old apartment and doing some grocery shopping, my artistic aspirations were the last thing on my mind. BF unloaded the last of the packages from the car and then told me to close my eyes and put my hands out. When I opened them I found one of the most awesome gifts I've ever gotten. It's a professional drawing tablet for graphic design and software to give me everything I need. It's an incredible gift. Supremely expensive and very cool in and of itself, but that's not the part about it that really touched me. It was how much confidence he has in me, to spend so much time researching what would be the best iteration and talking to various people to find out whether it was the best tool to get me started. It was so thoughtful and so uplifting. Without saying a word he managed to show me how much he supports and believes in me.
With all of the awful stuff that has happened this year, it was exactly the gift that I needed. I may be facing the loss of a dear friend and an uphill battle for my own life. I may be broke and drowning in debt, but I am so blessed to have this man in my life and such a wonderful and supportive family surrounding me.. This is also something of an anniversary for us. Three years ago today he kissed me for the first time and we both fell hard. Looking back, my life without him was so empty and gray. Now I have love and hope for a long, happy future.
It's a pretty great birthday
Birthdays have never been much of a big deal for me. Not since I was a kid anyway. Dinner with family or a few close friends. No parties, no big fuss. I don't like gift-centered days in general. They make me uncomfortable. My brother and I were talking about materialism the other day and how little we both care about stuff. Maybe it comes from growing up at the lower end of the economic spectrum. Maybe it comes from the lack of emphasis on posessions in our parents' homes. I think that most of it comes from how people centric our family is. No one ever pushed us to reject things, but the people in our lives and the experiences that we shared were always so much more important.
I have to say, I think it's a pretty nice way to live. I get far more out of giving gifts than receiving them and when I do receive them I often get more enjoyment out of the sentiment behind the gift than the object itself.
I have been searching for some direction for the last few months. Since I finished my degree I've felt incredibly unproductive. I've also been searching for a career that I can build without being hindered by my illness. After all, even if the bone marrow transplant happens and is successful, I still may never be able to teach. The pulmonary hypertension might not be stopped by the BMT and there will always be a chance for my MCTD to reccur and knock me off my feet again. So with all of this in mind I've been examing my interests, talents, and jobs that I could do from home whether I am sick or not. After doing a lot of self-examination and consulting with my friends and family, I've decided to go back to school to get my A.S. in Digital Design. I've always been artistic. I was never dedicated enough to really develop that talent, but I did some pretty good work in high school and I really enjoyed it. Since high school I've done some work toying around with text and graphic layout and design for more crafty-type things and it's come together pretty well. More than that though, it will give me the ability to create something tangible, which I find extremely fulfilling, and it's something that I can either do for someone else from my home or even use to start a home based business.
So I'm planning to start taking classes at the local community college starting this summer.
But tonight when we got home from a long day of hauling stuff from the old apartment and doing some grocery shopping, my artistic aspirations were the last thing on my mind. BF unloaded the last of the packages from the car and then told me to close my eyes and put my hands out. When I opened them I found one of the most awesome gifts I've ever gotten. It's a professional drawing tablet for graphic design and software to give me everything I need. It's an incredible gift. Supremely expensive and very cool in and of itself, but that's not the part about it that really touched me. It was how much confidence he has in me, to spend so much time researching what would be the best iteration and talking to various people to find out whether it was the best tool to get me started. It was so thoughtful and so uplifting. Without saying a word he managed to show me how much he supports and believes in me.
With all of the awful stuff that has happened this year, it was exactly the gift that I needed. I may be facing the loss of a dear friend and an uphill battle for my own life. I may be broke and drowning in debt, but I am so blessed to have this man in my life and such a wonderful and supportive family surrounding me.. This is also something of an anniversary for us. Three years ago today he kissed me for the first time and we both fell hard. Looking back, my life without him was so empty and gray. Now I have love and hope for a long, happy future.
It's a pretty great birthday
2.17.2009
the gray one hates it.
The gray cat hates our new apartment. She's taken to yowling at anyone who gets close and isn't clearly trying to pet her. She's not an especially pleasant cat under normal circumstances, but she apparently hates change in a rather large way.
Tough. Everything's changing here. Constantly. And if the humans don't have a say in the matter, the cat most certainly doesn't.
We moved on Sunday. Three men, a box truck, and me. I felt utterly useless. I can't carry a chair, let alone a box of books. My doctor is always giving me her " c'mon, you're kidding" look when she tests my muscle strength. But the guys kicked ass and got us about 70% moved in. We have our old apartment for a month still, so we're in pretty good shape. I hate living among boxes and our couches are in that missing 30%, but the gray cat and I will both live.
On another front, BF's mom's prognosis has gone from bad to worse in the last week or so. The doc's revised her previous two year estimate to a quarter of that. We've got a hospital bed coming tomorrow and we're trying to get things set up as best we can to be as comfortable as it can be for her. She's still staying with my dad & family. It's actually been nice to have her there. We've been having big family dinners every night and hanging out a lot. It's sucks though. It just feels generally surreal. She's dealing with it well, but her health is very poor. BF is taking it well, but it's a lot to deal with. Home hospice is a lot to come at you out of the blue. I just hope that we can get a little bit of our life back here. All of this flux isn't good for any of us.
The orange cat, on the other hand, loves our new place. She's made herself thoroughly at home and has even stopped attacking the gray one. It's good to see somebody settled here. Especially that little feline fire ball. She breathes life into all of us. I'm hoping that she can give a much needed dose of levity to all of us.
Tough. Everything's changing here. Constantly. And if the humans don't have a say in the matter, the cat most certainly doesn't.
We moved on Sunday. Three men, a box truck, and me. I felt utterly useless. I can't carry a chair, let alone a box of books. My doctor is always giving me her " c'mon, you're kidding" look when she tests my muscle strength. But the guys kicked ass and got us about 70% moved in. We have our old apartment for a month still, so we're in pretty good shape. I hate living among boxes and our couches are in that missing 30%, but the gray cat and I will both live.
On another front, BF's mom's prognosis has gone from bad to worse in the last week or so. The doc's revised her previous two year estimate to a quarter of that. We've got a hospital bed coming tomorrow and we're trying to get things set up as best we can to be as comfortable as it can be for her. She's still staying with my dad & family. It's actually been nice to have her there. We've been having big family dinners every night and hanging out a lot. It's sucks though. It just feels generally surreal. She's dealing with it well, but her health is very poor. BF is taking it well, but it's a lot to deal with. Home hospice is a lot to come at you out of the blue. I just hope that we can get a little bit of our life back here. All of this flux isn't good for any of us.
The orange cat, on the other hand, loves our new place. She's made herself thoroughly at home and has even stopped attacking the gray one. It's good to see somebody settled here. Especially that little feline fire ball. She breathes life into all of us. I'm hoping that she can give a much needed dose of levity to all of us.
2.09.2009
Family.
Have I ever mentioned how amazing my family is? I don't know what I'd do without them.
BF's mom was discharged from the hospital. They sent her home to her second story apartment when she is hardly able to stand by herself, let alone get up the stairs. Her building has no elevator, so when BF got her home, they weren't able to get upstairs. It was a few moments of panic as to where she could stay. We also live in a second floor walk-up, so she couldn't stay here and the earliest we can move into the new place is next Sunday. My mom is a nurse, so the first thought that I had was that she might be able to stay there, but my mom's bathroom is on the second floor, so that was immediately out. But then I called my dad and my step-mom. Even with four kids in school and a baby at home they were able to set up their sun room as a spare bedroom and she's staying there until she can get moving again or until we get into the new place, whichever comes first. I'm so grateful to them for being so helpful and having such open hearts. They set things up for her with almost no notice and have been cooking and helping and just being awesome.
We spent the evening over there tonight and it was just such a joy. Little boys running around. Adults chatting away. I couldn't imagine living without them. I love them all so much.
BF's mom was discharged from the hospital. They sent her home to her second story apartment when she is hardly able to stand by herself, let alone get up the stairs. Her building has no elevator, so when BF got her home, they weren't able to get upstairs. It was a few moments of panic as to where she could stay. We also live in a second floor walk-up, so she couldn't stay here and the earliest we can move into the new place is next Sunday. My mom is a nurse, so the first thought that I had was that she might be able to stay there, but my mom's bathroom is on the second floor, so that was immediately out. But then I called my dad and my step-mom. Even with four kids in school and a baby at home they were able to set up their sun room as a spare bedroom and she's staying there until she can get moving again or until we get into the new place, whichever comes first. I'm so grateful to them for being so helpful and having such open hearts. They set things up for her with almost no notice and have been cooking and helping and just being awesome.
We spent the evening over there tonight and it was just such a joy. Little boys running around. Adults chatting away. I couldn't imagine living without them. I love them all so much.
2.08.2009
Drama
I got my first anonymous post today. Highly entertaining as it was so specific that it couldn't possibly be left by anyone but BF's former sister-in-law, who goes by Caustic Cupcake online. So I figured that since she decided to make her communication to me public rather than just emailing me like an adult, I might as well make sure that everyone else gets to read it too.
If it's been three years and all of the resentment has been put behind you, why are you posting this entry?
I seem to recall the little boy's mom saying something similar about time having elapsed when you cried to her in a letter about how traumatic it was for you to have to see the Dreaded Aunt. Maybe you should give credit where credit is due.
Better yet, maybe you should drop all grudges and think of the boy first- and be grateful that you are so lucky to get to have him in you life and to love him, have him love you, and see him change and grow every day.
Now that is one caustic Cupcake.
So in exchange for her sweet comment and as a big thank you for being one of my most frequent readers, this one's just for her:
That was about as anonymous as the bright, shiny, new nails that you left under my tires. And it was just about as purpose driven.
#1. I never ever said I'd put that bullshit behind me. Why would I? You're still just as mean and nasty as you were then and last time I checked, if a dog bites you, the smart move is not turning your back and pretending it's no longer there. You drove an hour both ways to go to my house and put nails under my tires! And the last thing I heard from you on that subject was not let's see if we can put that behind us and be decent to each other because we both love the same little boy and we don't want to hurt him. No, you threatened me (2 years ago. There was still a little red Honda in that driveway until August '06 and you didn't pull that stunt until more than a month after I moved in) and then you gloated about it on your blog.
#2. I did not cry to anyone. I was pissed off and rightfully so. I had a major problem with your sister giving you my home address, email, and phone number without asking me if I was okay with it .
#3. I didn't have any problem with seeing you, I was perfectly willing to let the past stay there and to be just as cordial to you as I was to your boyfriend. You're the one who sent me a terse email, intentionally hiding your own personal email address, then showed up on my doorstep and refused to even say hello. That's not in that little boy's best interest. Your not interested in his best interest, you're interested in being a bitch. Every move you've made has made it perfectly obvious that you wanted to step on my toes as much as you could without being openly nasty. Passive aggression is still aggression.
#3.5 I don't even get this give credit where credit is due line. Who am I supposed to give credit to exactly? You haven't left anything in the past. Your sister was still wrong to give you my info without my say so. In fact, as far as I can tell I'm the only one who acted appropriately in this whole situation. (Besides being pissed about my personal information being handed over to someone who tried to flatten all of my tires, which I feel I was well within my rights to be, whether I went about it in the most tactful way or not.)
#5. Don't give me any of this bullshit about how I should just sit on my hands and be grateful that I get to spend time with him, as if that is some kind of right that you are conferring on me and have the ability to revoke. My seeing this child, loving him, watching and encouraging his growth, and being loved in return has absolutely nothing to do with you or with this situation. The only thing you're accomplishing with this immature crap is proving how bitter and vindictive you still are and showing how little interest you actually have in his best interest. I know, his mother knows, his father knows, everyone but you knows that this child is best served if the adults in his life can try their hardest to get along with one another. So he doesn't have to have two separate birthday parties every year. So he doesn't have to feel like a referee at his (insert sport of his choice) games. So he can have everyone he loves in one place without having any of them make him uncomfortable. The rest of us are doing that pretty damn well. We have all grown up and are living happier, more fulfilling lives than we were three years ago.
Why don't you join us?
I apologize for the sudden change in format here. I don't plan on making it a habit or letting this become that kind of blog. I certainly wish she'd just keep her mouth shut from here on out, which I doubt will happen, but I promise you won't have to read it if she doesn't. I'll get back to how insane things have been here and how great our new apartment is in short order.
If it's been three years and all of the resentment has been put behind you, why are you posting this entry?
I seem to recall the little boy's mom saying something similar about time having elapsed when you cried to her in a letter about how traumatic it was for you to have to see the Dreaded Aunt. Maybe you should give credit where credit is due.
Better yet, maybe you should drop all grudges and think of the boy first- and be grateful that you are so lucky to get to have him in you life and to love him, have him love you, and see him change and grow every day.
Now that is one caustic Cupcake.
So in exchange for her sweet comment and as a big thank you for being one of my most frequent readers, this one's just for her:
That was about as anonymous as the bright, shiny, new nails that you left under my tires. And it was just about as purpose driven.
#1. I never ever said I'd put that bullshit behind me. Why would I? You're still just as mean and nasty as you were then and last time I checked, if a dog bites you, the smart move is not turning your back and pretending it's no longer there. You drove an hour both ways to go to my house and put nails under my tires! And the last thing I heard from you on that subject was not let's see if we can put that behind us and be decent to each other because we both love the same little boy and we don't want to hurt him. No, you threatened me (2 years ago. There was still a little red Honda in that driveway until August '06 and you didn't pull that stunt until more than a month after I moved in) and then you gloated about it on your blog.
#2. I did not cry to anyone. I was pissed off and rightfully so. I had a major problem with your sister giving you my home address, email, and phone number without asking me if I was okay with it .
#3. I didn't have any problem with seeing you, I was perfectly willing to let the past stay there and to be just as cordial to you as I was to your boyfriend. You're the one who sent me a terse email, intentionally hiding your own personal email address, then showed up on my doorstep and refused to even say hello. That's not in that little boy's best interest. Your not interested in his best interest, you're interested in being a bitch. Every move you've made has made it perfectly obvious that you wanted to step on my toes as much as you could without being openly nasty. Passive aggression is still aggression.
#3.5 I don't even get this give credit where credit is due line. Who am I supposed to give credit to exactly? You haven't left anything in the past. Your sister was still wrong to give you my info without my say so. In fact, as far as I can tell I'm the only one who acted appropriately in this whole situation. (Besides being pissed about my personal information being handed over to someone who tried to flatten all of my tires, which I feel I was well within my rights to be, whether I went about it in the most tactful way or not.)
#5. Don't give me any of this bullshit about how I should just sit on my hands and be grateful that I get to spend time with him, as if that is some kind of right that you are conferring on me and have the ability to revoke. My seeing this child, loving him, watching and encouraging his growth, and being loved in return has absolutely nothing to do with you or with this situation. The only thing you're accomplishing with this immature crap is proving how bitter and vindictive you still are and showing how little interest you actually have in his best interest. I know, his mother knows, his father knows, everyone but you knows that this child is best served if the adults in his life can try their hardest to get along with one another. So he doesn't have to have two separate birthday parties every year. So he doesn't have to feel like a referee at his (insert sport of his choice) games. So he can have everyone he loves in one place without having any of them make him uncomfortable. The rest of us are doing that pretty damn well. We have all grown up and are living happier, more fulfilling lives than we were three years ago.
Why don't you join us?
I apologize for the sudden change in format here. I don't plan on making it a habit or letting this become that kind of blog. I certainly wish she'd just keep her mouth shut from here on out, which I doubt will happen, but I promise you won't have to read it if she doesn't. I'll get back to how insane things have been here and how great our new apartment is in short order.
2.05.2009
Well that was...
Interesting.
About two minutes ago, the little man left here to go stay with his aunt in NJ for a couple days while his mom is away on business. I was assured by BF's ex that her sister was under strict orders to be on her best behavior as all of our previous encounters have been openly hostile. And I couldn't say that she was a bitch today. It's just that I wouldn't consider refusing to raise her eyes above the little man's eyeline or not saying a word to me to be nice. In fact, it was rather rude. Oh well. Her boyfriend was nice. Said hi, introduced himself, even shook my hand, but he is a logic professor after all, and what logic is there in hating someone for something they did to someone else three years ago?
About two minutes ago, the little man left here to go stay with his aunt in NJ for a couple days while his mom is away on business. I was assured by BF's ex that her sister was under strict orders to be on her best behavior as all of our previous encounters have been openly hostile. And I couldn't say that she was a bitch today. It's just that I wouldn't consider refusing to raise her eyes above the little man's eyeline or not saying a word to me to be nice. In fact, it was rather rude. Oh well. Her boyfriend was nice. Said hi, introduced himself, even shook my hand, but he is a logic professor after all, and what logic is there in hating someone for something they did to someone else three years ago?
2.04.2009
So, we're moving.
BF's mom's got stage 4 squamous cell carcinoma. The prognosis is pretty crappy. It's awful. I don't even know how to express how awful. I feel like we were just getting to be close and now this. She seems to be doing well emotionally, but her health has gone down hill fast. She spent a week in the hospital, they let her out, and now, a week later, she's in the ICU. Her kidneys aren't functioning well and it's really doing a number on her. So, we're getting a bigger apartment and we're all going to move in together so that we can be there to help her. I'm actually looking forward to it. It's going to give us a chance to get to know one another much better and I won't have to worry about her being home alone with no one to give her the care that she needs.
So that's one part of my news. The other was supposed to be that BF got a new job and a big raise, but because of this whole situation with his mom and the move, we decided that it's not a good time to take on the stresses and demands of a new job. His current job made a great counter offer to keep him and he's been there for years, so the relationship is there and they're going to be flexible with time off and whatever else he needs over the coming months.
It's been a crazy couple of weeks. BF and I are both pretty stressed out. We're just trying to get everything in order so that we can deal with all of the issues that will surely come up. I feel awful for BF. He's going to have two of us to deal with now. His mom starts her chemo tomorrow and I could very well start with mine next month. We'll see. I think it's easier for both of us to handle because we've been living in the short term for so long now. I can't wait until the day comes when we can make real plans for the future.
BF's mom's got stage 4 squamous cell carcinoma. The prognosis is pretty crappy. It's awful. I don't even know how to express how awful. I feel like we were just getting to be close and now this. She seems to be doing well emotionally, but her health has gone down hill fast. She spent a week in the hospital, they let her out, and now, a week later, she's in the ICU. Her kidneys aren't functioning well and it's really doing a number on her. So, we're getting a bigger apartment and we're all going to move in together so that we can be there to help her. I'm actually looking forward to it. It's going to give us a chance to get to know one another much better and I won't have to worry about her being home alone with no one to give her the care that she needs.
So that's one part of my news. The other was supposed to be that BF got a new job and a big raise, but because of this whole situation with his mom and the move, we decided that it's not a good time to take on the stresses and demands of a new job. His current job made a great counter offer to keep him and he's been there for years, so the relationship is there and they're going to be flexible with time off and whatever else he needs over the coming months.
It's been a crazy couple of weeks. BF and I are both pretty stressed out. We're just trying to get everything in order so that we can deal with all of the issues that will surely come up. I feel awful for BF. He's going to have two of us to deal with now. His mom starts her chemo tomorrow and I could very well start with mine next month. We'll see. I think it's easier for both of us to handle because we've been living in the short term for so long now. I can't wait until the day comes when we can make real plans for the future.
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