It's been a while since I've posted. I've sat down many times and started to write. It's not as if my mind goes blank when I try to think of what to share. Its more like a thousand thoughts go running through my mind and I'm not sure where to start or how to make sense of it all. The last three months have been so simple and uneventful and yet confusing and full of discontent. And yet I have much to be thankful. I'm sitting here feeling sorry for myself, when despite everything, I've still been blessed with a lot. I may not have a job, or anything looking promising in the future, but I'm not homeless, or destitute. While I'd rather be off on my own, and often feel guilty I'm taking advantage, I have a mother who doesn't mind, and in fact enjoys, that I still live with her.
Three months ago, I faced the loss of my job wondering how it would all work out. Naively thinking I'd only need unemployment for a few weeks at most. That I'd find another job again soon. Sadly that has not been the case. And facing one disappointment after another as jobs I've applied for and hoped at getting disappear, has been unsettling to say the least. The emails from search engines keep coming, but they offer little in the way of hope. The simple fact that there is little out there should help me feel better about not having anything yet, but it doesn't ease the panic of not knowing how I'm going to continue to pay my bills and what I will do should I get sick in the meantime. I couldn't afford the COBRA payment for my insurance, and have no hope it seems of finding a job with benefits very soon. I finally curbed my pride enough to apply for medical assistance only to be denied because my unemployment benefits are too much for me to qualify. I don't have enough to purchase my own, but have too much to get the help I need...go figure...
Faced with another appointment scheduled with my new Rhuematologist, who I still have yet to see, I'm not sure what to do. I don't want to have to reschedule it again, and yet I'd be hard pressed to come up with the $280 it would cost me to go. I need to get in and get settled with the new dr, so that she's familiar with me and my case before I should happen to get sick, God forbid. And yet I can't even afford to do that. I need to go so that I can get the prescriptions I need to continue on with the health I have now, and yet if I can't do that then I will surely get sick and we all know I can little afford what would come with that. I live with the constant fear of the what ifs of living with chronic illness. What had been a quiet voice in the back of my mind before (when I had a job and insurance) seems like I can't shut them down anymore. What if I get sick? What will I do if the fevers start again? The pain in my chest, the racing heart and kidney problems of the last time, scare me to death. What will I do if it happens again when I have no way to help me pay for it?
And I've also been fighting anger about the whole situation. Angry that my life is not as simple as just needing a job to pay bills and other things. That my life is far more complicated than I ever could have imagined it getting. That I have to rely on things like my multiple medications (5) and other supplements (7) to help me feel somewhat normal, and have to go to quarterly dr appointments and various lab work to keep up with it all. Upset that I can barely remember what life used to be like, before I got sick. When things were "normal". Angry that swallowing 12+ pills every night, and wondering before each activity or chore if I'll feel alright in the morning, questioning what I can and can't do, that all of that has become my new "normal". Things I now do by habit and necessity. Upset that I'm forced to question whether I can handle doing something, or weighing the enjoyment of the moment against the risks of what may happen. I miss being able to do something because I want to, without having to question how it may make me feel later, or if I can actually do it at all. I miss being able to do things on the spur of the moment, decide to stay somewhere without having planned on it. Instead I have to be prepared if I decide to go somewhere overnight, I can't decide to just stay over at my sisters cause we're hanging out too late, because then I'd be missing my prescriptions and I know I'd feel like crap in the morning. I wish things were different. I wish I didn't have to worry about sickness and medications and doctor appointments. I wish I had perfect health. I wish I didn't have to worry about how people will respond to me and my illnesses, and having to wonder if people will accept me for me, regardless of my health. (I did warn you I was sitting here feeling sorry for myself right?) sigh...
But I need to remind myself that I am indeed blessed. I have a family who loves me, friends who see me for who I truly am, and often forget I have any health problems. A wonderful Church that lifts me up and encourages me through it all. A PCP that, despite having not seen me yet either, has given me refills on one of my medications because I really needed it and he understands I can't afford to see him right now. A mom who's more than happy to take care of me when I need it. While I'm making far less than before, with loan deferment and such, I'm able to continue paying my bills on unemployment. It could be far worse. I may doubt and question what is going on in my life, but I know that God is there and is taking care of me. I am blessed. I'll try my best to remember that.
Showing posts with label future. Show all posts
Showing posts with label future. Show all posts
Friday, January 14, 2011
Saturday, August 28, 2010
Uncertainty...the bully of Chronic and Invisible Illness
I have to apologize to Lana, I'm ridiculously behind in reading up on people's blogs, and unfortunately I'm back on July 29th of hers. So Sorry! I was just reading her post: "Being Chronically Ill Makes Me Question Myself" And all I can see is the parallel that holds true for all of us. Having doubt and uncertainty in ourselves and what we're able to accomplish is both personally devastating and creates roadblocks to what we're allowing ourselves to attempt to do in the future. Goals we've always had, and worked hard to meet, become less important, less achievable, as we look at ourselves and whats happening to our bodies and wonder if its even possible anymore.
Personally, I'm ashamed to admit, but I often see it as a "pass" for giving up, or not even trying. Or an excuse for why I didn't make it. It's hard to draw a line between what we physically can't do anymore, and what we can do, but have to do carefully. Having chronic/invisible illnesses not only affects our physical health, but our mental awareness of self, and our perception of what we're capable of. Quite frankly, It's not fair. But if we remain in the pity party, that I so often desperately want to throw for myself!, we're missing out on the beauty of what could be happening in our lives, and in the future. And what makes all of it worse, is the fact that others around us don't understand what we're going through. (See next post on Invisible Illness)
Our bully, uncertainty, tries to mess with our head and tell us we can't do it anymore. To quote Lana: "The truth is I know that am capable, but I don’t always know how able I am....when I am flaring I forget that I am able." I know I am right up there with her, and I'm sure many of you are as well. I can't begin to tell you how many times I've wanted to do something, but the words: if I weren't sick....runs through my mind as a disclaimer for why I can't. I'm afraid I won't succeed. I'm afraid adding one more thing to what I'm already doing will cause me to have a flareup. And I'm afraid to talk about it. I don't want others to know that I have other dreams, but I'm too afraid of what could happen to even try to accomplish them. I want to go back to school, I wish I'd never given up, that I'd pushed through to the end. That I hadn't picked a major based on things like: I can do this online, in my own time; or this degree will allow me to have a job with awesome benefits. I wish I didn't have to choose my job based on the insurance benefits. I wish needing insurance benefits didn't limit me in what I am able to do. I wish I had more time to volunteer. I wish I had more confidence in myself. I wish people understood.
But I also know, that if I let uncertainty win and take over all my decisions, that my life is not going to contain eveything I'd hoped for. I'll be stuck here, where I am, not going anywhere, or accomplishing anything new. I'm going to look back and be disappointed that I passed on so many opportunities. I'm going to see all those discarded dreams and wish I'd tried harder. I'm going to wonder if I would have been able to do it if I'd only tried. Thank you Lana, for reminding me that I am capable, and that I need to remind myself that I am able, and to try harder to shut out the little voice in my head telling me I can't do something. I'm going to re-evaluate what I want to do, and work on getting there. Because I know I can, I just have to work harder, and smarter to get there.
Personally, I'm ashamed to admit, but I often see it as a "pass" for giving up, or not even trying. Or an excuse for why I didn't make it. It's hard to draw a line between what we physically can't do anymore, and what we can do, but have to do carefully. Having chronic/invisible illnesses not only affects our physical health, but our mental awareness of self, and our perception of what we're capable of. Quite frankly, It's not fair. But if we remain in the pity party, that I so often desperately want to throw for myself!, we're missing out on the beauty of what could be happening in our lives, and in the future. And what makes all of it worse, is the fact that others around us don't understand what we're going through. (See next post on Invisible Illness)
Our bully, uncertainty, tries to mess with our head and tell us we can't do it anymore. To quote Lana: "The truth is I know that am capable, but I don’t always know how able I am....when I am flaring I forget that I am able." I know I am right up there with her, and I'm sure many of you are as well. I can't begin to tell you how many times I've wanted to do something, but the words: if I weren't sick....runs through my mind as a disclaimer for why I can't. I'm afraid I won't succeed. I'm afraid adding one more thing to what I'm already doing will cause me to have a flareup. And I'm afraid to talk about it. I don't want others to know that I have other dreams, but I'm too afraid of what could happen to even try to accomplish them. I want to go back to school, I wish I'd never given up, that I'd pushed through to the end. That I hadn't picked a major based on things like: I can do this online, in my own time; or this degree will allow me to have a job with awesome benefits. I wish I didn't have to choose my job based on the insurance benefits. I wish needing insurance benefits didn't limit me in what I am able to do. I wish I had more time to volunteer. I wish I had more confidence in myself. I wish people understood.
But I also know, that if I let uncertainty win and take over all my decisions, that my life is not going to contain eveything I'd hoped for. I'll be stuck here, where I am, not going anywhere, or accomplishing anything new. I'm going to look back and be disappointed that I passed on so many opportunities. I'm going to see all those discarded dreams and wish I'd tried harder. I'm going to wonder if I would have been able to do it if I'd only tried. Thank you Lana, for reminding me that I am capable, and that I need to remind myself that I am able, and to try harder to shut out the little voice in my head telling me I can't do something. I'm going to re-evaluate what I want to do, and work on getting there. Because I know I can, I just have to work harder, and smarter to get there.
Sunday, February 14, 2010
Dating disasters of the immunologically challenged...
It's taken me a while to be able to write this post. I've been mulling over the thought of putting it out there for a while, yet something always kept holding me back. I don't know if its a fear of putting it out there for all to see, or just not wanting to admit defeat out loud, but I know that I can't move forward without putting the past behind. It just occured to me (after seeing the million and one posts on facebook) that tomorrow (or at this point today) is Valentine's day. The irony of that is not lost on me, but after taking the time to gather my thoughts and getting ready to put it on "paper", I'm not going to let that stop me. It really has nothing to do with the supposed holiday, and I use that term loosely. I think my one friend put it best when she was telling us what she'd told her husband back when they were dating. She'd warned him never to buy her flowers or chocolates or anything else on Valentines day. She didnt want his affection to be expressed soley because hallmark was telling him he should. To this day, she will randomly get little gifts throughout their marriage, just because he loves her and wants to show her. So please, don't misconstrue my lack of enthusiasm for Valentine's Day as the bitter musings of a single person. That is not my intent. There's nothing wrong with it, I'm not bitter...not about the holiday anyway... :) But anyway, I'm getting off topic. Back to the reason I started this post.
Just last weekend was the first time I was able to even voice these thoughts out loud. Driving along with one of my best friends, Elizabeth, I shared with her something I'd never been able to admit out loud. I'd been secretly emailing and google chatting with someone I'd met on a Christian dating service. I know, I know...online dating, really? That's what you're thinking...I've thought it too, millions of times, especially during the course of testing it out. I struggle with the concept, wondering if its taking things out of God's hands and his timing, or if its just another tool He would use to help me find the man that he has for me. Its still an ongoing debate in my mind, and one I'm sure I'll never quite figure out. Needless to say, I've taken the time, on a couple occassions, to see what the hype was all about. Just a few test runs on the trial basis, nothing too serious, but I've met a few people along the way. One man in particular, the one mentioned above, had especially caught my attention. He was so sweet and unassuming when we first began talking, apologizing for seemingly pushing for my name, being understanding about the fact that I was obviously hesitant to give that kind of identifying information so soon. The very fact that he was understanding about the whole thing led me to give him an answer. Through the course of our communication, I'd come to anticipate and enjoy our "talks". We'd shared a lot and I was really coming to care about him more than I'd thought I would. The fact that my parents are divorced, and that my father was abusive didn't scare him away like I'd thought it might. He had already shared that his parents were divorced, which led to the conversation, but instead of being uncomfortable with the news of my past, he told me he was sorry I'd had that experience, and that he couldn't imagine what it had been like for me. His acceptance of this, and our continued conversations continued to grow our slowly moving relationship. I was fine with the speed, I was still a little apprehensive with the whole online aspect of it all, and the fact that I'd never even met him.
We talked for exactly eight weeks, and that is when I'd begun seeing symptoms of my coming flare. Its when I told him that I had RA (which at that point was what I thought I had). It's also the last time I ever heard from him. There was no response to that email, no more conversations on google talk. I'd tried to start one once, only to have him log off. I'd sent three emails after the initial one telling him of my condition. One informing him of how my dr's appointment had gone, telling him I knew it could be overwhelming and if he had questions to feel free to ask, I even gave him my phone number. Another to vent my frustration at his obvious avoidance of talking to me at all, and then a third apologizing for my outburst. Still, I never heard from him again. It's been two and a half weeks, but it doesn't make the rejection any less painful to handle. It's sadly not the first time its happened, and I'm sure it won't be the last. The fact that I have to live with a constant health problem is a lot for me to deal with sometimes, much less ask someone else to accept and live with as well. I understand that, I've accepted it, but it doesn't make facing it any easier. There have only been a few guys that I've let get close enough to find out. One of the hardest things about dating for me is knowing the right time to tell someone that I have a chronic illness. I dont tell a lot of people, because it always seems to change things. For some reason, people start to view me differently, Theres a sudden limitation to their way of thinking in what I'm capable of and what I can do. I hate that feeling. I hate seeing people pity me, or think my life is basically over. And I'm really afraid that I'll never find someone who will be able to accept that part of me.
Every relationship I've had, while they didnt go far, ended abruptly when they found out I have RA. One guy in particular, a dreadful blind date scenario, had a similar ending that certain members of my family still attribute to the fact that they thought I wasn't physically attracted to him. Granted, I wasn't in awe, but the very fact that they felt I was that shallow still hurts. Not enough however, to reveal the true fact of why I never heard from him again. Even tho he was supposed to take me out to dinner on my birthday...thats right. I waited for him for an hour and a half with no call and no appearance, before allowing my mom to talk me into going out with her. Ah, yes, another fond memory... (if you haven't caught on by now, I'm a seriously sarcastic person)
I'm 26, and I've never had a serious relationship, not really. There have been three guys, all of whom couldn't get past the fact that I'd told them I had RA. Most people don't even know I've dated at all. The failure rate isn't exactly something I'd like to broadcast...Anyway, through all of my experiences, I find it hard to be myself around the single guys I come in contact with. Friendships with guys who are dating someone else are always easier to handle--no threat at all in that. I've had people think I was flirting when I was just joking around with someone, so I'm constantly overanalysing myself and interactions. I find myself closing down when around said single guys, either because I'm not interested and don't want to encourage anything, or because I find myself interested in someone and afraid it will end the same way the rest of them have. It's a vicious cycle--I know it, but I also don't know how to stop it. Its an overwhelming flight response that automatically kicks in. I know I have to let go of all the pain in my past relationships before I'm able to move forward with anything else in the future. Thats the reason for this post. It's my first step in trying to let go and move on. I've always found writing down my thoughts and feelings to be cathartic. Its one of the reasons I started this blog in the first place. That, and knowing there are many others like me, wandering around the bloging world discouraged and looking for someone who understands what they're going through.
I know I've spent quite a lot of space rehashing and venting my frustrations, but be assured I haven't forgotten through it all that God is in control. It may sound trite to some, but the fact brings me comfort. It's what keeps me going when all I want to do is just sit down and cry or hibernate until it all goes away. It's what gives me hope. One of my favorite verses in the Bible is Jeremiah 29:11 "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." It's my life verse in fact. I cling to the knowledge that he wants what is best for me, and has a lot of good in store for my life. I just have to trust in him and let myself accept it when it comes. I have to stop running and give people a chance. Because the future he has planned for me, is not something I wish to miss out on because I was too afraid. Because I know that when I'm there it will surpass my expectations and truly be amazing. Because thats what his plan for me holds.
Just last weekend was the first time I was able to even voice these thoughts out loud. Driving along with one of my best friends, Elizabeth, I shared with her something I'd never been able to admit out loud. I'd been secretly emailing and google chatting with someone I'd met on a Christian dating service. I know, I know...online dating, really? That's what you're thinking...I've thought it too, millions of times, especially during the course of testing it out. I struggle with the concept, wondering if its taking things out of God's hands and his timing, or if its just another tool He would use to help me find the man that he has for me. Its still an ongoing debate in my mind, and one I'm sure I'll never quite figure out. Needless to say, I've taken the time, on a couple occassions, to see what the hype was all about. Just a few test runs on the trial basis, nothing too serious, but I've met a few people along the way. One man in particular, the one mentioned above, had especially caught my attention. He was so sweet and unassuming when we first began talking, apologizing for seemingly pushing for my name, being understanding about the fact that I was obviously hesitant to give that kind of identifying information so soon. The very fact that he was understanding about the whole thing led me to give him an answer. Through the course of our communication, I'd come to anticipate and enjoy our "talks". We'd shared a lot and I was really coming to care about him more than I'd thought I would. The fact that my parents are divorced, and that my father was abusive didn't scare him away like I'd thought it might. He had already shared that his parents were divorced, which led to the conversation, but instead of being uncomfortable with the news of my past, he told me he was sorry I'd had that experience, and that he couldn't imagine what it had been like for me. His acceptance of this, and our continued conversations continued to grow our slowly moving relationship. I was fine with the speed, I was still a little apprehensive with the whole online aspect of it all, and the fact that I'd never even met him.
We talked for exactly eight weeks, and that is when I'd begun seeing symptoms of my coming flare. Its when I told him that I had RA (which at that point was what I thought I had). It's also the last time I ever heard from him. There was no response to that email, no more conversations on google talk. I'd tried to start one once, only to have him log off. I'd sent three emails after the initial one telling him of my condition. One informing him of how my dr's appointment had gone, telling him I knew it could be overwhelming and if he had questions to feel free to ask, I even gave him my phone number. Another to vent my frustration at his obvious avoidance of talking to me at all, and then a third apologizing for my outburst. Still, I never heard from him again. It's been two and a half weeks, but it doesn't make the rejection any less painful to handle. It's sadly not the first time its happened, and I'm sure it won't be the last. The fact that I have to live with a constant health problem is a lot for me to deal with sometimes, much less ask someone else to accept and live with as well. I understand that, I've accepted it, but it doesn't make facing it any easier. There have only been a few guys that I've let get close enough to find out. One of the hardest things about dating for me is knowing the right time to tell someone that I have a chronic illness. I dont tell a lot of people, because it always seems to change things. For some reason, people start to view me differently, Theres a sudden limitation to their way of thinking in what I'm capable of and what I can do. I hate that feeling. I hate seeing people pity me, or think my life is basically over. And I'm really afraid that I'll never find someone who will be able to accept that part of me.
Every relationship I've had, while they didnt go far, ended abruptly when they found out I have RA. One guy in particular, a dreadful blind date scenario, had a similar ending that certain members of my family still attribute to the fact that they thought I wasn't physically attracted to him. Granted, I wasn't in awe, but the very fact that they felt I was that shallow still hurts. Not enough however, to reveal the true fact of why I never heard from him again. Even tho he was supposed to take me out to dinner on my birthday...thats right. I waited for him for an hour and a half with no call and no appearance, before allowing my mom to talk me into going out with her. Ah, yes, another fond memory... (if you haven't caught on by now, I'm a seriously sarcastic person)
I'm 26, and I've never had a serious relationship, not really. There have been three guys, all of whom couldn't get past the fact that I'd told them I had RA. Most people don't even know I've dated at all. The failure rate isn't exactly something I'd like to broadcast...Anyway, through all of my experiences, I find it hard to be myself around the single guys I come in contact with. Friendships with guys who are dating someone else are always easier to handle--no threat at all in that. I've had people think I was flirting when I was just joking around with someone, so I'm constantly overanalysing myself and interactions. I find myself closing down when around said single guys, either because I'm not interested and don't want to encourage anything, or because I find myself interested in someone and afraid it will end the same way the rest of them have. It's a vicious cycle--I know it, but I also don't know how to stop it. Its an overwhelming flight response that automatically kicks in. I know I have to let go of all the pain in my past relationships before I'm able to move forward with anything else in the future. Thats the reason for this post. It's my first step in trying to let go and move on. I've always found writing down my thoughts and feelings to be cathartic. Its one of the reasons I started this blog in the first place. That, and knowing there are many others like me, wandering around the bloging world discouraged and looking for someone who understands what they're going through.
I know I've spent quite a lot of space rehashing and venting my frustrations, but be assured I haven't forgotten through it all that God is in control. It may sound trite to some, but the fact brings me comfort. It's what keeps me going when all I want to do is just sit down and cry or hibernate until it all goes away. It's what gives me hope. One of my favorite verses in the Bible is Jeremiah 29:11 "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." It's my life verse in fact. I cling to the knowledge that he wants what is best for me, and has a lot of good in store for my life. I just have to trust in him and let myself accept it when it comes. I have to stop running and give people a chance. Because the future he has planned for me, is not something I wish to miss out on because I was too afraid. Because I know that when I'm there it will surpass my expectations and truly be amazing. Because thats what his plan for me holds.
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