It's been three months since my last visit to Vanderbilt. On Tuesday, I had appointments to see 4 different doctors and have a PFT (Pulmonary Function Test) done. Yes, that's a ton in one day. Yes, it was exhausting. And unfortunately, it turned out to be the most disappointing day since the whole Chicago/birthday fiasco in September.
See, I've been busy the last two months. I've been so blessed and reasonably happy. I've gotten to take a trip to California and one to Florida. I've spent lots of times at events and concerts with friends and family and to be honest, I've felt pretty good. Meaning, I've felt emotionally pretty good. I have some exciting family time and another beach trip planned. So, I've been looking forward to the next month. I walked into that day of meeting with doctors and truly expected to hear from them that I was relatively stable, maybe even a little bit better. What actually happened was so unexpected and made me feel so defeated.
My PFT results were more than 15% decreased since my last one in April. After a 6 minute walk test, we also found that my oxygen saturation is falling from the normal range when I'm at rest, down to the mid 70s with activity. If you're not a medically minded person, this is NOT good. As a matter of fact, it's "not good" enough that I'm now an oxygen tank totin' gal. I don't necessarily have to use the oxygen when I'm just sitting around but I have to use it when I'm out and about. I won't pretend that this is no big deal. To me, it is. It feels HUGE. It's incredibly emotional and uncomfortable for me. I feel sad and scared about it. I did know that this would happen eventually and yes, I realize it will make me feel physically better, but unfortunately that doesn't take away the less than desirable, accompanying emotions. So, this is an adjustment period. Adjusting to the stares and whispers, the sad looks and eyes full of pity, the running into people I know, the loss of parts of myself and my freedom.
In a choice to be positive, I say this adjustment period will be short. I have great support and just a flat out natural desire to be out in the world. I hardly expect an oxygen tank to be enough to stop me.
Lone Cyprus
Thursday, July 8, 2010
Sunday, April 25, 2010
What if...
I have to get up sooo early tomorrow. Ok, so it's just 6:30 am and many people get up way before that, but I am not usually one of them. I'm heading to Nashville...again. I have another appointment with my rheumatologist, the 4th in the last 6 months and I actually have another appointment scheduled that not many people know about.
Several months ago, I was made aware of a few other people with scleroderma getting lung transplants. Although I have known about it for awhile, I hadn't really considered this as an option for me since a lung transplant won't make scleroderma go away. I mentioned it to my doctor about a month ago and she seemed to think it was a possibility considering I don't yet have any other severe system issues outside of my lung function. So fast forward to tomorrow and I'm meeting a lung transplant specialist at Vanderbilt. I wouldn't be able to have the transplant there, as they don't do them for scleroderma patients. In fact, there are only 3 hospitals in the US that do, the most likely being in San Francisco. I'm just going to meet with the specialist tomorrow and she'll do a sort of pre-screening to see if I'm even a possible candidate for referral to a program.
About a week ago the tranplant specialist sent a new patient packet to me with all the information I'd need and in it there was a booklet with facts and program outlines. I read through it and came to the section that listed the qualifications to be considered for a transplant. I stopped when I read that a candidate would have a life expectancy of 18-24 months. I'm telling you, I knew this already. I know this. But there are these moments that happen, where the reality of that timeline becomes acute and almost shocking all over again. Then I realize how precious my time is.
In the past couple of weeks, at times, I've wondered if I've already lost it. I almost can't believe I'm even considering something like this again. It takes a lot of energy and there's so much emotional and mental strain. And then I think, but what if you could live to celebrate your 40th birthday? What if you could see your oldest niece turn 18? What if you were made well enough to walk around Rome one day? I suppose all the "what ifs" are worth at least the first visit tomorrow. Then, we'll see.
Several months ago, I was made aware of a few other people with scleroderma getting lung transplants. Although I have known about it for awhile, I hadn't really considered this as an option for me since a lung transplant won't make scleroderma go away. I mentioned it to my doctor about a month ago and she seemed to think it was a possibility considering I don't yet have any other severe system issues outside of my lung function. So fast forward to tomorrow and I'm meeting a lung transplant specialist at Vanderbilt. I wouldn't be able to have the transplant there, as they don't do them for scleroderma patients. In fact, there are only 3 hospitals in the US that do, the most likely being in San Francisco. I'm just going to meet with the specialist tomorrow and she'll do a sort of pre-screening to see if I'm even a possible candidate for referral to a program.
About a week ago the tranplant specialist sent a new patient packet to me with all the information I'd need and in it there was a booklet with facts and program outlines. I read through it and came to the section that listed the qualifications to be considered for a transplant. I stopped when I read that a candidate would have a life expectancy of 18-24 months. I'm telling you, I knew this already. I know this. But there are these moments that happen, where the reality of that timeline becomes acute and almost shocking all over again. Then I realize how precious my time is.
In the past couple of weeks, at times, I've wondered if I've already lost it. I almost can't believe I'm even considering something like this again. It takes a lot of energy and there's so much emotional and mental strain. And then I think, but what if you could live to celebrate your 40th birthday? What if you could see your oldest niece turn 18? What if you were made well enough to walk around Rome one day? I suppose all the "what ifs" are worth at least the first visit tomorrow. Then, we'll see.
Monday, April 19, 2010
This is what they're for
I have been so lucky to have many good friends in my life. Some from high school and college, some from church and work, some from living in Nashville or Louisville, some from random places or who were friends of friends. Even now, I have more people who I would call friend than I could name. Yet there is this group of girls that are so close and have been so important in my life that the word 'friend' doesn't quite fit.
Sure we do the normal friend things. We laugh, we talk, we cry, we complain, we celebrate. But these friends of mine aren't normal. It's not normal to be a young adult and have a close friend who is sick. It's not normal to sit with your friend during chemotherapy or sell half pot tickets at a fundraiser for her stem cell transplant. It's not normal to have to carry your friend's luggage or open her sodas. It's not normal for your friend to tell you she's dying. Before I found out I was sick, I would have told you I had great friends. Now, I know them, appreciate them and love them in a way I didn't know I could. I can't believe what they've dealt with from me and that they are willing to endure more.
Everything I want to say seems kind of cheap. I definitely feel like nothing I can write down is going to do justice to the privilege of having each of these girls in my life. I do want to say a few things. I want to write your names down and share just a bit of my heart about each of you.
Rachel, you are loyal and loving. You believe in me and support me no matter what. I never worry about your judgement or whether or not you'll be there. You let me go on and on about the same crap and you still listen. You, my friend, are the real deal.
Rebecca, you are probably the most thoughtful person I know. I have never, for one second doubted that you love me and you care for me. I know I can count on you to look out for me and you are always first in line to help. And really, what's Chicago without Peter Cetera??
Erin, girl you crack me up. We laugh so much together and I love every second of it. I feel privileged when you share your heart with me and I am so grateful that you allow me to share mine with you. I look forward to taking those ducks in the Pimpala to get some biscuit food.
Emily, I've known you since puberty. I remember meeting you in church in Junior High, being on the swim team in high school and you letting me invade your group of friends at the lunch table. We share similar taste in music, movies, TV and sports but thank God we would never like the same men! You're my fellow planner and adventurer and don't forget that "we only have each other."
Kasie, we've been friends for the least amount of time but most of the time it doesn't seem that way. There are many years between us, but there's a sense of familiarity in your character and values for me and your friendship has felt easy and natural.
Vanessa, I love you and I'm so glad we're friends. See, I can say that with no Captain! Can you??? Seriously, you've been such a great listener and a constant cure to my loneliness. I really am so so glad that we've grown to be such good friends!
Claire, you're the most difficult to put in words. We probably don't have the most 'everyday' things in common. We don't spend the most time together. We don't have similar families or dreams or beliefs. Still, I don't know that it would be possible for you to be any closer to my heart.
I can't believe you're all still hanging out with me. But I'm so glad you are. I am certainly the most blessed person to have friends like you. There are probably a list of things about me that drive you nuts and unfortunately I will likely give you many opportunities not to be proud of me but in this moment, as I write this I am filled with the certainty that you will be here with me. You'll walk, you'll fight, you'll sit, you'll laugh, you'll cry and you'll hold my hand. Thank you, my buddies, my chums, my comrades, my confidants, my cronies, my pals, my companions, my sisters, my friends.
Sure we do the normal friend things. We laugh, we talk, we cry, we complain, we celebrate. But these friends of mine aren't normal. It's not normal to be a young adult and have a close friend who is sick. It's not normal to sit with your friend during chemotherapy or sell half pot tickets at a fundraiser for her stem cell transplant. It's not normal to have to carry your friend's luggage or open her sodas. It's not normal for your friend to tell you she's dying. Before I found out I was sick, I would have told you I had great friends. Now, I know them, appreciate them and love them in a way I didn't know I could. I can't believe what they've dealt with from me and that they are willing to endure more.
Everything I want to say seems kind of cheap. I definitely feel like nothing I can write down is going to do justice to the privilege of having each of these girls in my life. I do want to say a few things. I want to write your names down and share just a bit of my heart about each of you.
Rachel, you are loyal and loving. You believe in me and support me no matter what. I never worry about your judgement or whether or not you'll be there. You let me go on and on about the same crap and you still listen. You, my friend, are the real deal.
Rebecca, you are probably the most thoughtful person I know. I have never, for one second doubted that you love me and you care for me. I know I can count on you to look out for me and you are always first in line to help. And really, what's Chicago without Peter Cetera??
Erin, girl you crack me up. We laugh so much together and I love every second of it. I feel privileged when you share your heart with me and I am so grateful that you allow me to share mine with you. I look forward to taking those ducks in the Pimpala to get some biscuit food.
Emily, I've known you since puberty. I remember meeting you in church in Junior High, being on the swim team in high school and you letting me invade your group of friends at the lunch table. We share similar taste in music, movies, TV and sports but thank God we would never like the same men! You're my fellow planner and adventurer and don't forget that "we only have each other."
Kasie, we've been friends for the least amount of time but most of the time it doesn't seem that way. There are many years between us, but there's a sense of familiarity in your character and values for me and your friendship has felt easy and natural.
Vanessa, I love you and I'm so glad we're friends. See, I can say that with no Captain! Can you??? Seriously, you've been such a great listener and a constant cure to my loneliness. I really am so so glad that we've grown to be such good friends!
Claire, you're the most difficult to put in words. We probably don't have the most 'everyday' things in common. We don't spend the most time together. We don't have similar families or dreams or beliefs. Still, I don't know that it would be possible for you to be any closer to my heart.
I can't believe you're all still hanging out with me. But I'm so glad you are. I am certainly the most blessed person to have friends like you. There are probably a list of things about me that drive you nuts and unfortunately I will likely give you many opportunities not to be proud of me but in this moment, as I write this I am filled with the certainty that you will be here with me. You'll walk, you'll fight, you'll sit, you'll laugh, you'll cry and you'll hold my hand. Thank you, my buddies, my chums, my comrades, my confidants, my cronies, my pals, my companions, my sisters, my friends.
Monday, February 8, 2010
My point of view
Nearly three months have passed since I last posted a blog. Many times I've sat down to write or post something I've written and decided to wait. Tonight my heart is tender and sore. I don't want to depress anyone, I just want to stop holding things in. I want to say what I want and stop worrying so much about whether you'll understand me or see me how I want you to. The truth is, you don't have to read this. I'm totally ok with it. But for reasons that I don't feel I have to explain, it helps me to write and share. So I am.
A few weeks after I was rejected for the stem cell transplant, I went back to my doctor in Nashville and started a collection of medications. Two weeks ago I had my three month follow up. I wasn't better. This is/was no surprise to me. I don't feel better. I can't even tell you I feel the same. So the answer is higher doses of some of the same meds and adding a few others. I'm up to 10 pills a day and if you know me at all you know I loathe even the idea of swallowing 10 pills a day. And frankly, nothing makes you feel more a part of the geriatric community than a counter full of prescription meds and a pill sorter.
Even bigger than this, more than all those pills, I've been so caught up in looking back over the past 15 months or so. I sit and I think and literally I almost can't believe what has happened. What IS happening. Just in this time, I got a terminal diagnosis, I've had chemotherapy, I bought into the hope of a stem cell transplant and remission, I fundraised over $80,000 in my tiny community, I endured the most terrifying and devastating rejection of my life, and since have been trying to figure out how to be ok with whats happening to me and watch while the lives of everyone I love continue on around me. What an awkward, painful place to be. Amazingly, this past year has been both a curse and a blessing. Never have I known love or pain like I have these past months.
In all my reflection there is a rather dominating theme in my mind. I've been forced and for the first time in my life able to think about my end. Death is uncomfortable and no one likes to talk about it or spend much time at all thinking about or considering it. But lately I've been thinking that maybe we're all missing out on something. This may not be true for everyone but in general, most of us spend our whole lives pretending we'll never die, or just trying not to think it will ever really end. In doing this, I feel like we're cheating ourselves a bit. I think we should remember that death is as much a part of life as birth. I think when we allow ourselves to consider that we in fact don't have forever, maybe we won't take things for granted so much. And maybe we would try harder to understand and accept and love others. Maybe we'd all be better if we realized that we really could be gone anytime and the impressions and legacy we'll leave mean something. I know this, I would never win a beauty pageant, I'm not a genius, or a stand-up comedian. I couldn't win American Idol or be cast in a toothpaste commercial. I don't own a mansion or designer clothes. I'm not hip or cool. I'm real average. But how I treat people and how I love them matters to me. How my nieces and nephews view their Aunt Beth is important. So I've been asking myself over and over, when I'm gone, how are people going to remember me? I think we should all think about it.
I don't spend a lot of time in my blogs talking about my faith. That's not because I've abandoned it and it's not because I'm trying to be cool and more mainstream either. My thoughts and feelings about it haven't been easy for me to express. I'm sure of this: I have a Creator and He loves me. I believe things work out the way they're supposed to. It's ok if you don't believe that. You don't have to. I do.
A few weeks after I was rejected for the stem cell transplant, I went back to my doctor in Nashville and started a collection of medications. Two weeks ago I had my three month follow up. I wasn't better. This is/was no surprise to me. I don't feel better. I can't even tell you I feel the same. So the answer is higher doses of some of the same meds and adding a few others. I'm up to 10 pills a day and if you know me at all you know I loathe even the idea of swallowing 10 pills a day. And frankly, nothing makes you feel more a part of the geriatric community than a counter full of prescription meds and a pill sorter.
Even bigger than this, more than all those pills, I've been so caught up in looking back over the past 15 months or so. I sit and I think and literally I almost can't believe what has happened. What IS happening. Just in this time, I got a terminal diagnosis, I've had chemotherapy, I bought into the hope of a stem cell transplant and remission, I fundraised over $80,000 in my tiny community, I endured the most terrifying and devastating rejection of my life, and since have been trying to figure out how to be ok with whats happening to me and watch while the lives of everyone I love continue on around me. What an awkward, painful place to be. Amazingly, this past year has been both a curse and a blessing. Never have I known love or pain like I have these past months.
In all my reflection there is a rather dominating theme in my mind. I've been forced and for the first time in my life able to think about my end. Death is uncomfortable and no one likes to talk about it or spend much time at all thinking about or considering it. But lately I've been thinking that maybe we're all missing out on something. This may not be true for everyone but in general, most of us spend our whole lives pretending we'll never die, or just trying not to think it will ever really end. In doing this, I feel like we're cheating ourselves a bit. I think we should remember that death is as much a part of life as birth. I think when we allow ourselves to consider that we in fact don't have forever, maybe we won't take things for granted so much. And maybe we would try harder to understand and accept and love others. Maybe we'd all be better if we realized that we really could be gone anytime and the impressions and legacy we'll leave mean something. I know this, I would never win a beauty pageant, I'm not a genius, or a stand-up comedian. I couldn't win American Idol or be cast in a toothpaste commercial. I don't own a mansion or designer clothes. I'm not hip or cool. I'm real average. But how I treat people and how I love them matters to me. How my nieces and nephews view their Aunt Beth is important. So I've been asking myself over and over, when I'm gone, how are people going to remember me? I think we should all think about it.
I don't spend a lot of time in my blogs talking about my faith. That's not because I've abandoned it and it's not because I'm trying to be cool and more mainstream either. My thoughts and feelings about it haven't been easy for me to express. I'm sure of this: I have a Creator and He loves me. I believe things work out the way they're supposed to. It's ok if you don't believe that. You don't have to. I do.
Tuesday, November 17, 2009
Confessions.
A few weeks ago I had a friend ask me if I ever just get mad about being sick. He thought I seemed to be dealing with it pretty well and was mostly positive. In general I don’t get mad very easily. It takes a lot to make me angry and even more to make me stay angry for any amount of time. In the past, I’ve just been able to let things go easily. On a regular basis over the past few months I’ve had people tell me how inspirational or encouraging I am because I’m staying positive and my spirits seem to be high. Truthfully, up until the last couple weeks I would say that I have, indeed been in good spirits. What I have to say isn’t all that inspirational these days. What I really want to say is this: I’m angry. I’m mad. I’m pissed. I’m irate. I’m livid and every other word you can think to insert here.
I’m mad that I can’t breathe. I’m mad that my hands hurt. I’m mad that I have to take all these pills everyday when I’ve never been comfortable taking meds. I’m mad that I can’t exercise. I’m mad that I can’t even walk through wal mart because by the time I park and get to the door I want to rest. I’m mad that my face is changing so much and my lips are gone and my skin is red. I’m mad that there’s nothing I can do to change any of this.
It makes me so angry that I’m 31, disabled and forced to live with my parents again. I’m angry that I can’t work. I’m angry that it makes me feel unproductive and at times, useless to be without at job. I’m angry that my future no longer holds the same hope it did just a year ago. I’m angry that I’ll never have my own child. I’m angry that the chance of falling in love again has become so small. I’m especially angry that illness has made me an automatic dismissal both by men and by new friendships. I’m angry that I have to search for a way to break the news to new people so THEY don’t feel uncomfortable…as if it’s easy for me.
Maybe if it were just these things I could much more easily deal with it. The problem is, though, on top of all that, I have to deal with people and their judgements and misunderstanding and careless words. That pisses me off. I am livid that any one person on this planet expects me to explain how I’m affording to or able to go to concerts or on roadtrips or even bigger trips. And even more so, that anyone would actually accuse me of taking advantage of people in situations or for material things. First of all you clearly don’t know me and second of all get over yourself for a minute and consider my situation. I have no real hope of living more than a couple years. While I am alive, I live with my parents and before I got sick I didn’t make a bunch of dumb decisions and get myself into a lot of debt. My bills (outside of medical ones) are few. Concerts, trips and other things have often been offered to me by people who love me and want to see me experience things that make me happy. I am not spending a lot of money on anything, as there isn’t a lot to be spent. Also, while I’m living so extravagantly and taking advantage of everyone, I also struggle to breathe and feel normal constantly. My chest is tight and I have skip doing lots of things I’d love to do. Asking people to help me all the time sucks. I hate it. So I say this to you, I’ll trade ya. I’ll take the job and the responsibility…and along with it, I’ll take a future and my dreams back and a more normal daily existence.
Obviously that can’t happen. And yes, I admit, I’m angry about it. But if I stay angry, I won’t enjoy what I do have. It might not be a lot or for long, but it’s what I’ve been given. I know I have to make the most of it to be happy. So I wrote this in an effort to let some of this go. It’s difficult for me not to worry about what people think, but I’m making every effort to do just that. If you’re not on my side, if you’re not gonna walk with me through this, then I’m not gonna spend anymore time worried about what you think or say.
I’m mad that I can’t breathe. I’m mad that my hands hurt. I’m mad that I have to take all these pills everyday when I’ve never been comfortable taking meds. I’m mad that I can’t exercise. I’m mad that I can’t even walk through wal mart because by the time I park and get to the door I want to rest. I’m mad that my face is changing so much and my lips are gone and my skin is red. I’m mad that there’s nothing I can do to change any of this.
It makes me so angry that I’m 31, disabled and forced to live with my parents again. I’m angry that I can’t work. I’m angry that it makes me feel unproductive and at times, useless to be without at job. I’m angry that my future no longer holds the same hope it did just a year ago. I’m angry that I’ll never have my own child. I’m angry that the chance of falling in love again has become so small. I’m especially angry that illness has made me an automatic dismissal both by men and by new friendships. I’m angry that I have to search for a way to break the news to new people so THEY don’t feel uncomfortable…as if it’s easy for me.
Maybe if it were just these things I could much more easily deal with it. The problem is, though, on top of all that, I have to deal with people and their judgements and misunderstanding and careless words. That pisses me off. I am livid that any one person on this planet expects me to explain how I’m affording to or able to go to concerts or on roadtrips or even bigger trips. And even more so, that anyone would actually accuse me of taking advantage of people in situations or for material things. First of all you clearly don’t know me and second of all get over yourself for a minute and consider my situation. I have no real hope of living more than a couple years. While I am alive, I live with my parents and before I got sick I didn’t make a bunch of dumb decisions and get myself into a lot of debt. My bills (outside of medical ones) are few. Concerts, trips and other things have often been offered to me by people who love me and want to see me experience things that make me happy. I am not spending a lot of money on anything, as there isn’t a lot to be spent. Also, while I’m living so extravagantly and taking advantage of everyone, I also struggle to breathe and feel normal constantly. My chest is tight and I have skip doing lots of things I’d love to do. Asking people to help me all the time sucks. I hate it. So I say this to you, I’ll trade ya. I’ll take the job and the responsibility…and along with it, I’ll take a future and my dreams back and a more normal daily existence.
Obviously that can’t happen. And yes, I admit, I’m angry about it. But if I stay angry, I won’t enjoy what I do have. It might not be a lot or for long, but it’s what I’ve been given. I know I have to make the most of it to be happy. So I wrote this in an effort to let some of this go. It’s difficult for me not to worry about what people think, but I’m making every effort to do just that. If you’re not on my side, if you’re not gonna walk with me through this, then I’m not gonna spend anymore time worried about what you think or say.
Wednesday, November 4, 2009
Long time, no update. Sorry.
I haven't felt like writing lately. Or maybe the truth is, everything I've wanted to write hasn't felt right to share. Sometimes, everyone doesn't need to know everything. I feel like it's a good thing to keep some things for just me and maybe a select few who are close. This doesn't mean there's been nothing going on though. I do have some medical updates for those concerned and a couple other things I'd like to share too.
I began taking Cellcept about a month ago now. After taking it for only 4 days, I began developing mouthsores. I contacted my doctor and she recommended I stop taking it until the sores healed. The did heal after several days and at my doctor's request began taking half the dose for a few weeks to sort of ease my body into taking it. I have been taking the full dose for almost a week with no problems and no side effects at all. So far so good...
I also went to see a pulmonologist last week at Vanderbilt. Everytime I think about this visit, I just can't believe how blessed I've been with finding amazing doctors who are caring and thorough. I have heard some pretty awful stories about some people who see doctors who don't listen or treat them with much respect. Thankfully, I haven't had ANY experiences like that. The pulmonologist addressed my pulmonary hypertension. He told me mine is mild but he did want to put me on some medication that would also help with Reynaud's (my blue, numb fingers in the cold). I'll follow up with both him and my rheumatologist in January.
I've had this increasing desire to share with my friends and family and supporters what has become of the money that was so kindly given and worked so hard for during the fundraising for the transplant. Because I wasn't able to get the transplant, the hospital paid all of the bills I racked up with tests and procedures in that first week with the money we had provided them. The remaining money was put back into the fundraising account here locally. This account is managed by a few of my family members and the remaining money will be used for medical bills (MD visits, medicines, tests, procedures, emergency care, etc). Because I am not insured, this money will basically serve as my insurance money over the next year and a half. I will hopefully be eligible for Medicare in the spring of 2011. I realize I am not REQUIRED to explain myself, however, the hard work and giving hearts of so many people make me realize the responsibility required of me and the respect I want to show. Thank you. Thank you. Thank you.
I'm doing well. Life's funny. It's not easy all the time but I can't even explain how blessed I am. I got to spend a much needed weekend with my best friends in Gatlinburg and I'll leave in just a few days to go to Florida with my dad. The holidays with my family are just around the corner and I can't remember the last time I wanted to see winter so badly. Probably never. There are so many happy times to be had and warm memories to make!
I began taking Cellcept about a month ago now. After taking it for only 4 days, I began developing mouthsores. I contacted my doctor and she recommended I stop taking it until the sores healed. The did heal after several days and at my doctor's request began taking half the dose for a few weeks to sort of ease my body into taking it. I have been taking the full dose for almost a week with no problems and no side effects at all. So far so good...
I also went to see a pulmonologist last week at Vanderbilt. Everytime I think about this visit, I just can't believe how blessed I've been with finding amazing doctors who are caring and thorough. I have heard some pretty awful stories about some people who see doctors who don't listen or treat them with much respect. Thankfully, I haven't had ANY experiences like that. The pulmonologist addressed my pulmonary hypertension. He told me mine is mild but he did want to put me on some medication that would also help with Reynaud's (my blue, numb fingers in the cold). I'll follow up with both him and my rheumatologist in January.
I've had this increasing desire to share with my friends and family and supporters what has become of the money that was so kindly given and worked so hard for during the fundraising for the transplant. Because I wasn't able to get the transplant, the hospital paid all of the bills I racked up with tests and procedures in that first week with the money we had provided them. The remaining money was put back into the fundraising account here locally. This account is managed by a few of my family members and the remaining money will be used for medical bills (MD visits, medicines, tests, procedures, emergency care, etc). Because I am not insured, this money will basically serve as my insurance money over the next year and a half. I will hopefully be eligible for Medicare in the spring of 2011. I realize I am not REQUIRED to explain myself, however, the hard work and giving hearts of so many people make me realize the responsibility required of me and the respect I want to show. Thank you. Thank you. Thank you.
I'm doing well. Life's funny. It's not easy all the time but I can't even explain how blessed I am. I got to spend a much needed weekend with my best friends in Gatlinburg and I'll leave in just a few days to go to Florida with my dad. The holidays with my family are just around the corner and I can't remember the last time I wanted to see winter so badly. Probably never. There are so many happy times to be had and warm memories to make!
Thursday, October 15, 2009
Is there a reset button on this thing?
I’ve had one of those days where I can’t wait for it to be over so I can try again tomorrow. I don’t usually wish days away, but this has been one that no matter what I do, I can’t seem to make myself rise from the funk I’m in. I can honestly say that I didn’t even recognize myself today. I was sad and down and irritable and short and just all around nasty. This has simply not been a good day.
I found myself in a situation last night that left me feeling misunderstood and undervalued. I didn’t realize until now how shaken my confidence is as a result of my diagnosis and well, prognosis. Social situations are my thing. Or at least they used to be. It’s hard to make me uncomfortable and I always know what to say and how to behave. Unfortunately, that’s totally changed and in an unfair way. Now I’m finding it hard to know what to say or how much to say. It’s even difficult sometimes to hear the things that people would say in response to news like mine. Pretending its not there bothers me, but treating me as though terminal illness is all there is to me, is hurtful.
The thing about last night is that I don’t even really know this person. And to be honest, it’s not high on my priority list to get to know them, but their carelessness and insensitivity seemed to push up all these feelings I didn’t realize were such a big deal. I had no idea how insufficient I really feel now. How insecure I had become in light of my illness. Most of today, I have felt like I have little to offer. I mean not as a human being, but maybe as a woman and most definitely as the adventure and fun seeker that my heart still very much longs to be. The sadness today came from the realization of all these dreams I’ve had my whole life that were seemingly stolen in a matter of moments just a few weeks ago. This isn’t a pity party for Beth. It’s just me being honest about how I feel. I’ve had these intense dreams and desires to get married and have a family for as long as I can remember. Trust me, it was hard enough to keep these dreams alive before with my old fashioned or more traditional views on dating but now they seem to have died with little hope of living again. I say that because I don’t believe that hope is ever really gone, but I certainly know that odds are not good.
So, the struggle that remains is this; the disease has not yet taken my freedom. I still look healthy. I can still enjoy, most amazingly, all of the social things that make me so happy. The problem is my dreams can’t live like they used to. And a dreamer is what I am. So how can I be myself with anyone who doesn’t know me well? If you want to see an awkward situation, imagine being next to me when a guy tries to have a conversation with me and when he asks what I do for a living the gist of the answer is, “Nothing, I’m disabled.” Real comfortable. There are only 100 of these scenarios that make socializing with people I don’t know well, a balancing act. And it’s one I’m not good at. I have not yet mastered how to function in this new world I’ve been forced into. And then in comes the insecurity. It’s amazing to me how many people have already avoided and/or walked away from me because I’m sick. I know illness is difficult to deal with and I honestly don’t fault anyone for feeling that way.
So here’s what I want to say to anyone who might read this; I’m gonna screw up with all this. I don’t really know what I’m doing. I’m trying to remain the person I’ve always been and who I’d like to be but also leaving room to grow and change. I may not always respond the way I should or say the right things. But I AM trying. Know that I have no problems talking about it with anyone who might ask, but also understand that scleroderma is not all there is to me. I do in fact have a lot to offerand you might be surprised. I could have something to give and we both might learn something.
I found myself in a situation last night that left me feeling misunderstood and undervalued. I didn’t realize until now how shaken my confidence is as a result of my diagnosis and well, prognosis. Social situations are my thing. Or at least they used to be. It’s hard to make me uncomfortable and I always know what to say and how to behave. Unfortunately, that’s totally changed and in an unfair way. Now I’m finding it hard to know what to say or how much to say. It’s even difficult sometimes to hear the things that people would say in response to news like mine. Pretending its not there bothers me, but treating me as though terminal illness is all there is to me, is hurtful.
The thing about last night is that I don’t even really know this person. And to be honest, it’s not high on my priority list to get to know them, but their carelessness and insensitivity seemed to push up all these feelings I didn’t realize were such a big deal. I had no idea how insufficient I really feel now. How insecure I had become in light of my illness. Most of today, I have felt like I have little to offer. I mean not as a human being, but maybe as a woman and most definitely as the adventure and fun seeker that my heart still very much longs to be. The sadness today came from the realization of all these dreams I’ve had my whole life that were seemingly stolen in a matter of moments just a few weeks ago. This isn’t a pity party for Beth. It’s just me being honest about how I feel. I’ve had these intense dreams and desires to get married and have a family for as long as I can remember. Trust me, it was hard enough to keep these dreams alive before with my old fashioned or more traditional views on dating but now they seem to have died with little hope of living again. I say that because I don’t believe that hope is ever really gone, but I certainly know that odds are not good.
So, the struggle that remains is this; the disease has not yet taken my freedom. I still look healthy. I can still enjoy, most amazingly, all of the social things that make me so happy. The problem is my dreams can’t live like they used to. And a dreamer is what I am. So how can I be myself with anyone who doesn’t know me well? If you want to see an awkward situation, imagine being next to me when a guy tries to have a conversation with me and when he asks what I do for a living the gist of the answer is, “Nothing, I’m disabled.” Real comfortable. There are only 100 of these scenarios that make socializing with people I don’t know well, a balancing act. And it’s one I’m not good at. I have not yet mastered how to function in this new world I’ve been forced into. And then in comes the insecurity. It’s amazing to me how many people have already avoided and/or walked away from me because I’m sick. I know illness is difficult to deal with and I honestly don’t fault anyone for feeling that way.
So here’s what I want to say to anyone who might read this; I’m gonna screw up with all this. I don’t really know what I’m doing. I’m trying to remain the person I’ve always been and who I’d like to be but also leaving room to grow and change. I may not always respond the way I should or say the right things. But I AM trying. Know that I have no problems talking about it with anyone who might ask, but also understand that scleroderma is not all there is to me. I do in fact have a lot to offerand you might be surprised. I could have something to give and we both might learn something.
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