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.

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!

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 don't wanna shake your hand. Just wave.

Mom and I drove to Nashville today to see my doctor at Vanderbilt. I have an update and somewhat good news. The thing is, before I started going through all of this, I didn't get a lot of this lingo and there's no way I would have understood most of what I'm going to tell you. So, I'm gonna tell you what the deal is, and then make it as simple as possible for those of you who aren't medically minded and are more like I was pre-scleroderma.

So, here's the deal, pickle. My rhematologist, who is the doctor that will treat me for scleroderma, is referring me to a pulmonologist to address my pulmonary hypertension issues. She'd like me to see a pulmonologist at Vanderbilt that sees only patients with pulmonary hypertension. So, this guy knows most all there is to know about it and exactly what it is I'll need. Hopefully, I'll get in to see him in the next few weeks.

In addition, we discussed and agreed that I will begin taking a drug called CellCept. CellCept is an immunosuppressant and is used as an anti-rejection drug in organ transplant patients. I'm taking the drug in hopes that it will address my pulmonary fibrosis and inflammation. My doctor told me today that she has a few patients who are currently taking it and have stabilized. That means that they aren't necessarily better, but they haven't gotten worse either. As you can imagine, this is quite attractive to me given my options. I've been told that most people tolerate it pretty well with few side effects and IF it works, could definitely buy me some time.

The down side to this? Well, two things really. First, the cost. Recently they have come out with a generic for this drug, which is great! The unfortunate part is that even the generic is incredibly expensive. The plan is, let's try it and see if it works then we'll worry about how to pay for it long term. (Plus, I'll apply for assistance with the manufacturer.) Second, the immunosuppression aspect. I'm gonna have to, in part, go against my nature and chill with the physical affection. I have to begin to be more aware of putting myself in situations where I can easily get sick. Less crowds, less handshakes, less hugs...not just because it's flu season and having crappy lung function mixed with the flu is a terrible combo, but also because the drug will make me more susceptible to infection. Don't get me wrong, I'm still gonna do what I want and go where I want, I'm just gonna be more mindful of higher risk situations. I guess I'll have to go with more smiles, winks, thumbs up, pats on the back and blowing my kisses.

Overall, things feel a little brighter these days. I still have diffuse systemic sclerosis. It still sucks. I still have hope. Period.

Family

For the past week, my heart has been especially heavy. There's no denying some sadness and fear exist but even more prevalent is the increasing awareness of the necessity of family. My feelings and beliefs about family, including their purpose and specific roles in my life have been pushed to the front of my heart and mind. I understand that we don't choose who our family members are. I didn't pick out my mom or my dad, brother or sisters. They were given to me. It is no accident that we're connected. I feel this includes all of my extended family as well. Look, I'm not crazy, I realize every member of your immediate and extended family won't be your best friend. You may not even like some of them. That's ok. But I will say this, now more than ever, I appreciate and understand the gift of family. I have taken advantage over the past several months, and even more so the last week, of connecting with and beginning friendships with many cousins, aunts and uncles that I have not been close to since childhood. The warmth, comfort, love and happiness this has added to my life is welcome and cherished.

I have been blessed with much. I have great step-parents, step-siblings, nieces and nephews, a hilarious and loving grandma and many long-time friends who are like family to me. And man, my immediate family? My mom, my dad, my brother and two sisters...they are my constant. They are always on my side, always loving me, defending me, encouraging me, looking out for me, and laughing with me. I cannot and do not want to imagine it any other way. My parents are amazing and my siblings truly are my best friends.

My older sister, Kristi, is the nurturer, the one I can count on to encourage me and check on me when I'm sick. She's who I call when I can't sleep and where I stop when I want easy company. She's always there. Although she's five years older, she always listens to me and respects my thoughts and opinions. She thinks they're important. Although I realize there's no such thing as perfection, I look up to her as a wife and a mother and in my eyes her flaws are few.

Jarrod is two years older than me and he's the big brother every girl should have. He is truly one of my favorite people on the planet to hang out with and I dare you to try to find someone cooler. You can't. I have always admired him and wanted to be like him. He joined the swim team in high school, so did I. He learned to play guitar, so did I. He went to ISU for college, so did I. He got involved in the Baptist campus ministry, so did I. He got his PhD and is a research scientist, so...I went another direction. :) He's my realist. He'll talk facts with me and let me feel what I feel. We can talk sports, family, religion, politics, current events or just make fun of any and everything. It's simple really. He likes me. And I feel lucky.

My little sister, Carin isn't actually little anymore. She's 2 years behind me and our relationship is the one that has evolved and changed the most over the past few years. I used to think we were very different, but now I see that's not true at all. We're a lot a like. We're both emotional and sensitive. We're both smart and a little sassy. (Her more than me, of course.) And I can always count on Carin to defend me and rise up to fight for me. The great thing is, I can also count on her to cry with me if I need and she never fails to remind me of my worth. She's the pesky little sister that's grown into a best friend.

Then there's my Dad. I confess my Dad and I have only grown close over the past few years. He's always been around and available but I've also always been away or running around. His love for me is great and I've never known that more than I do now. Since I've settled here, I've gotten to know my Dad as more than just my daddy but as a man too. Everyone loves my Dad and now I can see all the reasons why. He's funny and genuine. He's generous and full of life. He's the kind of guy who would own a successful restaurant and stand out back, cooking on a Friday night surrounded by all his friends who just want a fun, welcoming place to hang. Hmm...sounds familiar.

My mom may be mentioned last but she'll never be the least. My mom is supermom. She has loved me beyond measure. She has accepted me and supported me. Rescued me and let me go when needed. She has allowed me to be who I am and although it has likely been hard at times, she tries not to question too much. She taught me to love, respect and accept others and her example of a strong, smart woman is not lost on me. She has sacrificed much more than I deserve and there aren't words to describe the love this daughter has for her momma.

Not everyone has what I have. I know this. But there is absolutely no time like the present to think on and share your love for the people in your family. These gifts of mine are priceless.

Not your typical, everyday post.

Before I begin with all the information and explaining, I need to put a sort of disclaimer on this blog. My emotions are raw, my nerves are shot and my heart is sad. This is the hardest thing I've ever had to write, so I will try my best to make sense of it for you.

Yesterday was my 31st birthday. My mom and I were in Chicago for all the pretesting for the stem cell transplant and my friend Claire was visiting. We were all three hanging out in our hotel room and the phone rang about 10:30. It was my nurse and she told me that the doctor needed me to come to his office at 3:00. He had gotten some test results back and wanted to discuss them with me. My heart immediately dropped and I became instantly anxious, but she couldn't tell me anymore. The next several hours were unbearable as I waited. I feared he had found something wrong with my heart and wouldn't be able to do the transplant. The doctor had stressed over and over how important the health of my heart is for survival through the procedure.

The time came and my mom and I went to the office and waited. The doctor came in and as the words came out of his mouth, I heard what I had known for hours, months maybe, even years perhaps; I'm dying and there's nothing anyone can do to change that. As reality replaced my disbelief, panic and nausea followed, tears stung my eyes, I felt his hand on my shoulder and glanced at my mother's face. The pain and sorrow I saw was more than I could stand. There are no words for that kind of devastation.

You see, the doctor explained that my arterial pressure is too high in my heart. The blood doesn't flow easily through my arteries from my heart because the fibrosis in my lungs is so bad. My lungs sort of act like a brick and keep the blood from easily getting through the arteries which builds up pressure in them. In addition to this, my right ventricle wall is damaged beyond repair and to an extent that would, when coupled with the high arterial pressure, cause death during transplant. So, no transplant for me.

The next question is, what else can I do? The short answer is, not much. My plan at this point, is to return to my rheumatologist in Nashville for treatment. I will be able to get some meds and oxygen that will make my quality of life better. There is no cure for scleroderma and outside of the stem cell transplant, there is nothing that addresses scleroderma directly, only meds to control symptoms. There are a few experimental drugs being used for treatment of scleroderma but none of the results have been particularly consistent or promising. I will of course look into any options, including these drugs and follow the advice of my doctor.

Does this mean I have months or maybe years to live? I don't know. And I don't want to know. I plan to find some way to be at peace with this, do what I need to do to stay as healthy as I can for as long as I can and I plan to soak up every minute I have left with the people I love, doing the things I love. I have so many people who are always on my side. Many of you worked hard to support me and see me through the past several months and I am grateful. I wish I knew how to express the depth of my gratitude. "Thank you" is all I've got.

Project Stem Cell Transplant: Day Four

Short and sweet today. My right heart cath has brought much anxiety and fear over the last few weeks. This morning, I found, it really isn't so bad. I was lucky because they could access a vein in my neck so I had a short recovery time. I had to stay for about an hour and half after the procedure only because they had given me a small dose of a mild sedative...told ya I was nervous! Beside the fact that it's creepy to have something in your neck, it really was quick and relatively painless. My arms are now official pin cushions as I had 2 more sticks today. The good news is the pressures in my heart and lungs are high but not high enough to keep me from getting the transplant. And even better, week one is over! I made it!

On a more "fun" note, my mom bought me an early birthday present! A City Pass, which is a booklet of tickets to go to some of the coolest tourist places here in Chicago. I'll get to go to the Adler Planetarium, The Field Museum, The Museum of Science and Industry, The Shedd Aquarium and today after a long nap, we went to the Observatory atop the John Hancock Center (94 floors high!). I took some cool pictures and there are amazing views of Chicago and Lake Michigan. I have company coming to visit this weekend and no tests until Tuesday! And right now, the bathtub and bed are calling my name!