Lone Cyprus

Lone Cyprus

Tuesday, November 17, 2009


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.

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!

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.

Tuesday, September 29, 2009

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.

Tuesday, September 22, 2009


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.

Tuesday, September 15, 2009

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.

Friday, September 11, 2009

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!

Thursday, September 10, 2009

Project Stem Cell Transplant: Day Three

There was going to be no blog today. I planned to go to bed early but have laid down twice to try to fall asleep and can't. I have to be at the hospital for a heart cath in 8 hours and I guess I'm feeling a little nervous. I figured writing about it might ease the anxiety a little. I keep thinking that after tomorrow morning, I'll be officially through my first week of tests. Feels like it's gone really fast.

This morning I had an MRI of my heart done. Lots of the tests I'm having done are to check and double check the condition of my heart. Dr. Burt explained the other day that the heart is uniquely important in transplants for Scleroderma patients. He says it's very important there's not damage or decreased function or we won't be able to go ahead with the transplant. So far, so good though. I've had a CT scan and stress echo and both seem fine. When they get the results from the MRI and the heart cath and then I meet with the cardiologist next week, we'll know for sure. P.S. The MRI was no fun. This was my first and I wouldn't be upset if it were my last!

The MRI took so long we had to hurry to my dentist appointment. I'm having my mouth and teeth checked because the mouth is one of the most vulnerable places for infection and they needed to make sure there were no causes for concern. I checked out OK, which better have been the case considering I feel like I spent the summer at the dentist getting work done! Something I got really excited about is the dentist I saw happens to be particularly interested in Scleroderma and has a very good understanding of what patients with this disease deal with. She was so kind and took the time to personally make me some custom toothbrushes that are easier to hold! Since my grip is not good and I can't close my hands all the way, she molded some acrylic to the handle of the toothbrushes to make them easier to use. They're so great and it helps a lot!

I had to hurry over to my appointment for my vein check after that. Mostly all that means is someone explained to me that during harvesting, I'd have to get a catheter put in my jugular vein to remove the stem cells. I already knew this, but she educated me and my mom on what to expect and how the day would go. The nurse was a funny lady and after weighing me told me that I should take this time in my life to be thankful that I'm not a size 5. Apparently, women with quote, "a little meat on their bones" have an easier time with harvest and usually only take about 4 hours opposed to 7. So, indeed I am thankful to not be a waif.

As I sit here and think back on this week, I definitely feel worn out. It's been rough at times. But I did it. Everytime I'd be in some uncomfortable position or forced to wait forever or someone has been rude and the thought to say "just forget it" has crossed my mind, I dismissed it and pressed on. (And believe me, those thoughts have come frequently.) Although I had no idea I'd be a pin cushion quite like this, with one stick from a blood draw and 3 IVs in 3 days, they've all been done with no problem. I guess the bottom line is, this isn't fun, as I knew it wouldn't be, but it's bearable. I can do this. At least I have my mom. And Dr. Pepper in the refrigerator. What else do I need?

Wednesday, September 9, 2009

Project Stem Cell Transplant: Day Two

Beginning these first two days blogging each day may be a bad idea. I'm not sure I'll be able to keep up everyday. You might actually be glad about that! Some days and things just aren't that interesting. In addition to how today went, I do have another reason for writing. Many people have asked for my mailing address while I'm here in Chicago and I finally remembered to check into that. So, if you're wanting to send something snail mail style, send it here:
The Seneca Hotel
Beth Fortwendel
200 E Chestnut St
Chicago, IL 60611
Keep in mind, this is only my address until the 2nd of October. It will change after that!

Today was a relatively good day. I had to be at the hospital a little earlier and started the day with a Pulmonary Function Test or PFT to those familiar. It's basically a breathing test and measures lung function and capacity. PFTs aren't my favorite tests but they are far from the worst! After the PFT I had a stress echo scheduled. This test, in my opinion, completely sucks. Really I'm not complaining about it because it just has to be done, but let me just give you the low down on what happens during this 90 minute test. In only a hospital gown, I laid on my side in a room cold enough to hang meat. I did have two blankets on but nothing on my hands and they get so crazy cold, it wasn't long before I was pretty miserable. But really this is the tolerable part. Besides being cold there's a blood pressure cuff on my left arm, which is the side I'm laying on, that goes off every 3 minutes. I have an IV in my right arm that is intermittently getting medication passed through. In addition the tech is jabbing an ultrasound wand thingy (I don't know what they're called) into my chest and ribs. And I mean jabbing hard enough it's painful. Also the tech is asking me to take breaths and hold it while he takes pictures and this is especially hard because I can't hold my breath as long as the normal person so we keep having to do the pictures over. And best of all, on top of all that, half way through the test they start giving me a medication that makes my heartrate go from around 80 up to 160. So my heart feels like its beating out of my chest, I'm shaking from being cold, I'm trying to remember to hold my breath long enough and hold my left arm out when the blood pressure cuff goes off. This test is NO fun and I'm always very glad when it's over.

So after all that, we had lunch in the cafeteria and got a chance to meet with the transplant doctor. Our visit was short and sweet. He reminded me of the risks of transplant and likely results. He told me that over a period of a few years I would see great improvement in my skin and potentially some in my lungs. He said there are some people who do not have much lung improvement and there are some that do. I've decided I'm ok with either, as long as they don't get worse. That's the biggest concern for me.

I was done by 2:30 so we came back to the room and had a short nap then we got a little dinner and walked through a few stores close to our hotel. I feel good about today and hopefully tomorrow is even better. One thing I have already found that troubles me about Chicago, I can't find Dr. Pepper in any restaurant I've been in. What's the deal? Didn't they know I was coming?

Tuesday, September 8, 2009

Project Stem Cell Transplant: Day One

Ok, so I'm tired already and we just started today! I spent about 8 hours at the hospital getting all kinds of fun things done. I got to meet with Kristin, the nurse liason for the stem cell program. She's great and she sat with us for about an hour and explained the whole process and what to expect during each phase. Some things seem way less scary now and some things are more concerning.

I had labs next. They needed 18 vials of blood for testing. EIGHTEEN. Ridiculous. It was smooth sailing with no problems at all.

After the labs I had to go to yet another floor and department to get an EKG. The test was quick and painless and not really noteworthy at all. What WAS noteworthy was the walk into the department. A lady about 3 times the size of me using a walker on wheels was called back just before me. Instead of waiting for a tech to come open the door for her, she attempts to pull the door open (which opens toward her) on her own. I'm just behind her and see that she's having a hard time so I step up right behind her and try to grab the door to help so she can pass through. Just as she tries to move backward out of the way, she loses her balance and falls into me, pinning me against the wall. I'm holding all of this lady's weight on me for a good 30 seconds before a tech gets there to help her gain her balance again. That was fun. Actually when I think back, it probably looked hilarious. Wish I would have seen it instead of being involved.

Then the real fun came! I waited for an hour and 30 minutes to get several xrays and scans done. I'm normally fine with the waiting. I understand things get backed up but I was in a hospital gown and it was freezing. I had a chest xray, a CT scan of my chest, sinuses, abdomen and pelvic area. I was told before that I wouldn't have to get an IV, but of course I get to the waiting room and they call me back to get one. I consider that minor compared to the nasty Barium drink I had to down. Three bottles of that stuff in an hour. Simply put, it was gross. So really, I can't say I love being in the radiology department.

It's been a long exhausting day. Running around the hospital to different appointments with different demands at each will wear you out! I feel better after getting to eat and take a bath (in the jetted tub!) and relax. I am very grateful for one lesson I've learned while here though. I'll save you the visual, but last night I learned that bathtub jets can be powerful enough to basically flood the bathroom. Good to know.

Monday, August 31, 2009

My new, old love

I have had this series of long term relationships over the years. With music, not with men. Since the time I've been old enough to choose what I listen to on my own, I've dated several different genres. I tend to listen to only one 'kind' of music at a time, with maybe just a little sprinkling of others in the mix. Most of my teen years were spent listening to top 40 Pop stuff. Then I had a very long love affair with Christian music that lasted from college through the time I started Grad school. I even had a short fling with jazz while I was in Seminary. About three or four years ago, I had my first relationship with Country music. It lasted about a year and then quickly faded into a love for hip/hop and R&B. During this summer, my love affair with Country music has been reignited.

I've been a little better this time with dating around and including other types in the mix, but mostly, my car radio, my Pandora stations and my MP3 player stay on Country tunes. As silly as this might sound, Country music reminds me of home. Yes, I realize that I quite literally live at home. But there is just something comfortable and familiar about the melodies and music of Country. I think it's one of the few genres of music that can make you feel the entire spectrum of emotions.

It's possible that this rekindled love was influenced by the 8 or 10 trips to Nashville I took this summer. I took advantage of each, and although I experienced other types of music there, was most impressed by the Country. So I admit I was one of the last to know Sugarland was going to be in concert in Nashville this past weekend. I've been a fan of Sugarland since their first album, although during my hiatus from Country music, missed an album or two in the middle. Anyway, if there is ONE group I'd want to see in concert, Sugarland would be the one. The Nashville show sold out quick, I'm sure since they were playing with Keith Urban. But cool as my dad is, he hooked me up with a pair of tickets to go anyway. I packed my clothes and grabbed one of my favorite people in the whole world and headed to the show on Saturday.

Our seats were not good. Really, they were in the top section. Thankfully we were facing the stage so our view was clear...just VERY far away. Surprisingly, I didn't care. Neither did Claire. From the first note of the first song until the last, we were caught up. There were even tears a couple times throughout their performance. It was such a great experience. I can't remember the last time I just felt that happy and carefree. The thing is, this wasn't just a concert of a band I like that I went to with a friend. It was a lot more than that. It represented some of my favorite things in the world and I got to experience them in what felt like perfection. Not a night I'll soon forget.
So, my relationship with Country music continues although we aren't exclusive. I'm still dating around and may never commit to just one, but Country remains the frontrunner for the months to come. I look forward to many more happy times together.

Wednesday, August 26, 2009

The "what, the "how" and the "then what" of it all.

Over the past few months I've gotten lots of comments and questions, said with a good amount of surprise like, "Wow, you look really good" or "You seem to be doing great" or even "You don't look sick". Most of these come from people who either don't know me well or haven't seen me in quite some time. It's true though, I do look and seem pretty normal...from the outside and when I'm just sittin around. I've had lots of questions about what Scleroderma means to me, as in, how has it affected my body and my daily life. And of course, people want to know what the hope is for the transplant.

Each person with scleroderma has a different story to tell. In many ways, I consider myself fortunate. My skin is affected but only in my hands, forearms, face, neck, chest and shoulders, with my hands being the most severe area. Even though my hands are the worst and they are limited to some extent because of skin tightening and thickening, I still have, what I consider, good use of them. Mostly I'm just limited in things like opening cans or bottles or doing anything where I have to use a tight grip. My lips have thinned and my nose has narrowed, but these are cosmetic and are not at all threatening to my health at this point. I also experience issues with heartburn, which is very common in people with scleroderma. There is often some scarring and issues with the esophagus but for me, it's as easy as taking a pill each day and I have no more heartburn worries.

The most serious and alarming issue that I'm facing is the progression of fibrosis in my lungs. Their function has been very seriously affected and is what prompted the updated diagnosis and choice to receive the stem cell transplant. Without explaining every measurement in detail, and as I understand it, most adult non-smokers have about 80% lung function. Mine is somewhere in the lower 30s, last it was measured in April. I received chemotherapy once a month for the first six months of the year to address this problem. I had little or no improvement as we expected and continued to pursue the transplant. As far as my daily life, I do have to take my lung function into consideration. I am commonly short of breath in activities as normal as showering, dressing, fixing my hair, etc. I've learned lots of ways to adjust the way I do things and have had to eliminate some things I used to do. I take more baths than showers and give myself more time to get ready than I used to. I don't do the amusement park thing anymore and I'll plan to only go to 1 or 2 stores instead of shopping all day. I'll ask to be dropped off at the door instead of walking blocks to our destination and I might only dance to one song (and rather slowly) instead of being on the dance floor all night. HOWEVER, I can still do lots of things I love and I do in fact still look pretty normal. I feel blessed to still be able to read, see concerts and live music, eat out with my friends, play with my nieces and nephews, shop with my mom, sing in the car and laugh with everyone I love.

So, what are my hopes and expectations for the transplant? First of all, my hope is that there is no longer any active progression of scleroderma in my body. In other words, I want it to never get any worse than it is right now. Secondly, I hope that over the course of the first two years post-transplant, my lung function improves at least 20-30%. And of third importance, I'd love for my skin to soften and be flexible and pretty again. Opening a jar of peanut butter would bring great joy! :) As far as I know, because the transplant is still in the investigational stage, there aren't a lot of published statistics on the outcomes. I know that over the past several months I've learned that the number of people with positive outcomes FAR outnumber those without. With most things in life, there are no guarantees. I am willingly going through the transplant with no promise that I'll get "better".

I understand this but I choose to believe that I'll have many more years to enjoy life and those I love. I even choose to believe that many of the dreams I've had for my life for many years will still happen. I believe that one day I'll play guitar again, that I'll be a member of a gym, and that I'll have a family of my own. I know that someday I'll walk around Rome and I'll go back to Africa. I don't say any of this because I'm trying to be inspirational or to convince anyone of my "great attitude". I'm saying these things so that you each know how much I have wanted/needed your prayers, encouragement, positive thoughts and kind words. I have used them and will continue to do so. Thank you, thank you, thank you.

Thursday, August 20, 2009

The Lowdown on the Stem Cell Showdown

I received the transplant info and I promised to share so here ya go! The date to begin is scheduled for Tuesday September 8th and we'll head up to Chicago the day before. So, here is the general schedule for the transplant:

Sept 8-18 -- Outpatient daily testing including but not limited to, Pulmonary Function Test, Chest CT Scan, Right Heart Cath, dental exam, vein check, Heart Echo, and something like 5 zillion blood tests. There will also be other tests, but I'm not sure what they all are. Basically, they are going to check every inch of my body, inside and out. Sounds fun, eh?

Sept 21 -- I will be admitted to the hospital for mobilization chemotherapy. I will receive the chemo and then be discharged the next day. Within 5 days after mobilization I will begin taking Neupogen injections daily for 6 days.

Oct 1 -- This is stem cell harvest day. I will get a catheter in my jugular vein to pull out my stem cells. If there are not enough stem cells collected this day, they will repeat the harvest the next day.

Oct 3- Oct 21 -- THIS IS THE BEST PART!! I get to go home for almost three weeks! I had no idea this was the case and I am soooo happy about it. I won't feel bad yet and I'll get more time with my family and friends before I do!

Oct 22 - Nov 7 -- On the 22nd I'll be admitted and begin chemotherapy. I will receive chemo for 5 consecutive days. The sixth day, which would be Oct 27, is transplant day! I'll get my stem cells back, then we wait for my immune system to rebuild itself. Anticipated discharge date is Nov 7. It is possible and likely that I won't come home immediately following discharge as I will likely have to be close to the hospital for at least a week for check ups.

I am glad that we anticipate being done and home before Thanksgiving and I pray that remains the case. I have no desire to spend the holidays in the hospital! I have lots of things planned for myself in the next 2 1/2 weeks before I head to Chicago. The nervousness and anxiety are ever present, but I am confident that I am equipped with who I need around me and what I need inside me to successfully fight my way through. I can't promise I won't whine or complain or vent along the way, but I promise to try my best to keep the goal in sight. Thank ya for readin' and followin' and prayin' and lettin' me know I'm loved. And now I'm off to pack for my very first trip ever to the Indiana State Fair...yeah, that's right. Be jealous.

Sunday, August 16, 2009

Loving With Intent

I'm in my third night of a short "vacation", as I'm calling it, to visit a friend in Nashville. I plan to leave tomorrow and head back home but can't seem to fall asleep as my mind is so full. I was thinking about all the running I've been doing lately: the short roadtrips, the dinners, concerts, movies, nights out with friends, shopping trips, etc. And I suddenly realize what I haven't been mindful of...my need to just experience feels urgent. Experience any and everything. If I'm totally honest, I feel hopeful the transplant will be a great success and deep in my heart I feel I have a lot of life left to live. However, I understand the reality. There are no guarantees here. I am not promised old age...or even middle! So knowing the transplant will begin within the next month, has moved me to action. Action in everything but maybe the most important thing.

A few weeks ago I had a conversation with an old college friend and we were talking about the fundraising and all the money that had been given and all the hard work that had gone into each event. She stopped and said, "Doesn't it make you feel good to know you're so loved?" I told her I did but then I told her that in a way it made me sad that I had to get sick to realize it and how we should all, myself included, be more intentional with our love. So, I've been sitting here thinking back about my weekend and all the fun I've had and the great things I've experienced and it hits me how many opportunities to love people I've missed.

Don't misunderstand me. I'm not beating myself up unnecessarily. I do believe that in general, I'm a nice person. I try to be kind and understanding and forgiving. But I'm talking about doing more. There are many times where if I weren't so caught up in myself or just plain lazy, I'd love people in actions so much more. I know I'd be well served to think of others more often, work to meet others needs and be more understanding and accepting of differences.

I have amazing family and friends who show me how loved I am all the time...and in little ways. I get dropped off at the door. I get my chair carried for me to Shakespeare in the Park without even asking for help. I get my cans or bottles opened so I don't injure my fingers. I get an extra blanket or jacket when I'm cold. I get phone calls, letters, cards and emails just to see how I'm doing. The people who love me, do it well.

I'd like, myself, to be this way all the time. I want to recognize opportunities to love and encourage and I want to take advantage of them. I wish we all would. I believe being mindful of people outside of myself will make my life better. I believe God feels this way too and I'm thankful He's put so many great teachers in my life.

Tuesday, August 11, 2009

Bloggin' it

I've gone back and forth a lot and struggled with the decision to start a blog. I worried about having nothing to say or seeming arrogant, assuming people would want to read about what I think and do. The truth is, never in my life have I felt like I had more to say. Maybe none of it will matter to anyone but me, but I can't escape the desire to write it all down. On top of this, I have found myself in recent months scouring the internet for websites and blogs of other people with scleroderma. I just wanted to know their stories. I wanted to know what happened to them, how they dealt with it, what they did about it. Each time I read something I found myself wanting to know more, wishing I could get more details or more explanation. So, I figure here's MY chance to do that for someone else. I can talk about the disease or the transplant or the fact that I had fillings done in my teeth today and still managed to eat three donuts! I'm not sure the donut info will help anyone, except maybe to show that things may not be perfect for me right now, but I'm enjoying my life in spite of it all.

Though this is technically my first post on this blog, I have already posted some things I've written and previously posted on Facebook or my website. I will no longer be updating in either of those places. So, be sure to check here if you wanna know what's up.

Many people have asked when I'll be going to Chicago for the transplant. I'm disappointed to tell you that I STILL don't have a date. However, we expect it to be in the next 3 to 4 weeks. For me, that's plenty soon! Besides, I'll just use this time to squeeze in some more fun, make a few memories and have a couple more donuts!

Saturday, August 1, 2009

Kidneys and Football

I'm one of those people that spend their Sunday afternoon and evenings glued to the TV during the fall and winter months soaking in as much of the NFL as possible. I love football. So, I was no stranger to the man I saw as I walked into the dinner party I had gone with my dad to cater earlier this week. Former Super Bowl Champion quarterback for the Dallas Cowboys, Troy Aikman. He was friendly and gracious enough to pose for a few pictures. He even came into my dad's restaurant for breakfast the next day and you better believe I didn't miss that either! It was a really fun, exciting experience for this small town girl.

Also, since I last posted I had a bit of an issue with what we thought were kidney stones, but thankfully were not. I did have an acute kidney infection and took a little trip to the ER. I'm not sure which hurt worse, my kidney or the fact that it caused me to miss the Def Leppard and Poison concert I had been looking forward to. Either way, the pain from both has passed and all is back to normal.

I also attended the Comedy Fundraiser in Indianapolis that my friend Claire organized in conjunction with her 30th birthday. The whole event went great and my face and stomach hurt when we left from smiling and laughing so much. What an incredibly talented group of people who are also incredibly kind to give their time for me. I had a blast!

I also wanted to take a minute and recognize an individual who has been a great help to our fundraising efforts. Months ago, Ed Ewing, who is a pal of my dad's, pledged a $10,000 contribution to the fund for my stem cell transplant. I hadn't seen him since May and I finally ran into him again this past week and he was kind enough to let me take a picture with him. He and his wife, Linda are so kind to donate in this huge way and I wanted them to know how much I appreciate their generosity. Thank you so much Ed and Linda!

Although I don't have an exact date yet, my mom and I plan to be heading to Chicago by the end of the month. I will update more as soon as I know and in the mean time, I covet your prayers and encouragement. Thank you all again for your love and support.

Grace and Peace to you.
Beth Ann

Tuesday, July 21, 2009

Fabulous talent from a fabulous friend

This is a recent blog entry by my friend, Nicole. She's a fabulously talented photographer and is using her talent and big heart to help me! Please, check it out!!

Photography for a Cause | Beth
Beth was the kind of girl who was everyone’s friend. How could you not like Beth? She had a contagious laugh, a giving spirit and the kindest heart. When I met her, I was a freshman at Indiana State University, and Beth was a senior. She took me under her wing for the short time we attended ISU together. We went on mission trips together, did women’s Bible studies as well as hung out and laughed about things only we thought were funny. So after graduation had come and gone, I figured it would be unlikely I’d ever see her again.

Then randomly, while shopping in Evansville, I saw from a distance someone who looked awfully familiar. When I finally realized it was Beth, I didn’t hesitate to give her a hug. From that point forward, we decided to keep in touch. Of course, Facebook helped facilitate that.

And it was also Facebook that was the bearer of the bad news. I’ll never forget reading Beth’s heartfelt note on Facebook that spoke of her newly diagnosed, terminal disease. My heart sunk with every word I read. But through her words, Beth showed that she was strong and she was going to fight this head on.

And I’ve decided I’ll help her fight this fight Scleroderma, too. I am offering a headshot night on August 4 at 5:30 p.m. at The Old Courthouse in downtown Evansville. The cost is a $10 donation to Beth’s transplant fund, and you get the images emailed directly to you for personal use such as on blogs, resumes and web sites such as Facebook and MySpace, just to name a few. Everyone who participates in the headshot event will be entered to win a portrait session from me as well as will get the DVD of images for free (a $350 value!).

I offered to do a photo shoot for Beth to help her raise awareness of her disease and how others can help make a difference. And really, what girl doesn’t want pretty pictures of herself? Here are a few of our favorites:

(You'll need to go to the blog to check out the pics for now! http://www.nicoleneffphotography.com/blog/?p=1320
You should go for sure!)

I also asked Beth to let my blog readers know a little bit about what she’s going through and how you can help. Here is her story, in her own words:

My name is Beth and I’m 30 years old. I have a terminal disease called Scleroderma. Scleroderma is an autoimmune disorder that attacks the tissues in your body and causes you to overproduce collagen. When first diagnosed, I had what my doctors and specialists considered a less severe form that caused me discomfort but allowed me to go on with life normally. However about a year ago my condition worsened. I was then diagnosed with the most severe form of Scleroderma. This affected my lungs and reduced their function as well as affected major areas of skin on my body. It also causes me to be very fatigued. Due to this I am unable to work and without insurance.

Most people with this form of Schleroderma only live about 5 years. This is my fifth year since diagnosis. There is no cure for this rare disorder. However, there is one thing that I can do. I have become eligible for a stem cell transplant. This procedure will essentially reboot my immune system using my own stem cells and allowing my body to go back to a more normal state. Then I can hopefully return to the Beth that once was. However, this procedure costs $100,000 and is being paid out of pocket. My family and friends have been working non-stop to raise money for this procedure. Also, the procedure is being performed in Chicago and I will be there for 2 months with my mom incurring the expense of the stay.

So, I need your help. Please check out my website to donate and learn more about my journey and the fundraising efforts at: www.aplanforbethann.com
Also, it’s very helpful to forward my website on to all you know to help spread awareness. Thank you!


You can also order prints from Beth’s session by going to www.nicoleneffphotography.com/clients, creating an account and then entering the password “Beth”. All proceeds from print sales will go directly to help Beth pay for her transplant.
So whether you choose to get your headshot, purchase a print or donate directly to Beth’s fund by going to www.aplanforbethann.com, you’ll be helping save a life. My friend’s life.

Nicole Neff

Sunday, July 19, 2009

An Update...better late than never!

When my brother (who manages the site) and I began my website and decided to add an Update page, I had planned to post updates much more often than I have. I'm sorry for being so tardy in my posting. I promise to do better! So before I tell you what's coming, let me update you on where I've been!

The past 6 weeks or so have been very busy. We had a great turnout at the benefit dinner/dance/auction in the middle of June. I had a great time seeing so many of my friends and family in the same place. We raised nearly $19,000 that night for the fund. It was such a great success and it was so satisfying to see it all work out after all the hard work I know was put in to planning and organizing.

Since then we've had numerous food concession stands at auctions, fairs and picnics as well as face painting and balloons at the 4H fair! We've had a yard sale and bake sale as well as a 4th of July picnic of our own at my dad's place, the New Boston Tavern. We've also had a jewelry party and an open house fundraiser selling great products from Tupperware, Pampered Chef, Avon, Mia Bella Candles, etc. We even had a great time at the Cornhole Tournament at Johnny B's in Owensboro. Each event has been such a blessing and a complete success!

In the little time away from fundraisers I've managed to get in a few little trips and events that were a little more personal in nature and a great need to maintain sanity and sustain joy! I've been to Nashville a couple times to stay with a friend overnight and see some live music, one of my true loves! I even went to a New Kids on The Block concert in Indy with my oldest and closest high school friends! Before you judge, let me tell you it was one of the funniest most refreshing times I've had in the past months, whether they're a silly old boy band or not!

I was even lucky enough to get my wisdom teeth pulled between all of this in the past few weeks. I had them pulled one side at a time with the first going much more smoothly than the second! All is well now though and unfortunately, I only have more dental work to be done in the coming weeks before the transplant. This I am NOT excited about!

Also in the coming weeks I plan to attend another concert in Indy with those same silly high school friends. (Do we see a theme here?) Only this time, a little more rock n roll and a little less pop-like. We're seeing Def Leppard, Poison and Cheap Trick. I grew up listening to this stuff and I'm excited to get to see them!

Next weekend is the final fundraiser that is planned at this point. (There may be more in the future, but none have been scheduled.) One of my oldest and dearest friends has organized a fundraiser in Indianapolis at a comedy club in conjunction with her birthday. I'm so excited to go and laugh with and at her. Details for this fundraiser are on the Fundraising Events page.

We hope transplant time will be mid August. I promise to keep you all better informed and will write again after the Comedy night! Thanks so much for checking in on me and be sure to stop in and sign the guestbook! I love hearing from everyone!

God Bless!

Monday, June 8, 2009

June Update

As I write this, it's Monday night June 8th about 11pm. My mind is swimming with all the ways to update the progress of our fundraising efforts. In only a few short months, in this tiny community and beyond, more than $30,000 has been donated to the fund to pay for the stem cell transplant. We still have a somewhat long and challenging road ahead and the journey has been a learning one. There have been dead ends and closed doors. There have been "nos" and a conflict or two. For each one of these, there have been 10 new ideas, 10 open doors, 10 yeses, and more blessing and love poured out on me and those in my family than I could have ever imagined. Words don't do justice to the debt of gratitude I owe. I am more thankful than I know how to express.

The antique chest raffle, the golf scramble, the poker run, the mary kay sales, the yard sales, the selling of tshirts, bracelets and candy bars, all of it, was a success because of the great people I have in my family, my circle of friends and my community. So a huge thank you to anyone who has been a seller, a buyer, a giver, a laborer, an idea-person, a supporter, a pray-er, or just a speaker of kind words. All of this is overwhelming and humbling. I don't deserve it but know I am blessed beyond measure.

My spirits are good and my hopes are high. My chance at a brand new life is just around the corner and knowing I am surrounded by so many amazing people makes me excited for each day that comes.

Love to you all,
Beth Ann

Thursday, April 30, 2009

And the verdict is...

Stem Cell Transplant! Almost as good as being proven innocent. After a full day of medical testing, I met with Dr. Richard Burt at Northwestern Memorial Hospital in Chicago and he told me I was indeed a candidate for the stem cell transplant.

Just for some short education, the procedure I'll be getting is called an autologous stem cell transplant. The very basics are this: I will receive chemo and take some shots that push stem cells from my bone marrow into my blood stream, they will be harvested from a vein in my neck then after a couple weeks then 5 more days of chemotherapy to massively suppress my immune system I will be given back or receive the "transplant" of my own "cleaned up" stem cells. I'll then wait in the hospital in isolation for a few weeks for them to sort of reproduce a strong immune system.

Because my immune system is attacking my own body, the idea of the transplant is that we can take out my stem cells, clean them up and then give them back to my immunosuppressed body to sort of "reboot" my immune system. So what's the catch? Well there are two.

One is the risk of infection and complication during the transplant. Because my immune system will be so suppressed, there is a higher risk of infections. There are lots of precautions taken to avoid this, but the truth is a risk remains.

The other catch is the cost. This procedure could cost up to $110, 000. And because I'm not insured, I need to have all the money before we can proceed with the transplant. So, the fundraising efforts are on. We hope to reach our goal sometime before the end of summer. We have a small start already and are working hard to organize and plan.

Thank you so much for the encouragment, prayers and help so many of you have already given. I am grateful and because of so many of you I can continue to be hopeful. Thanks again and I will let you know as fundraising events come.


Tuesday, March 3, 2009

Health Update

Just an update on my health, both physical and emotional...

I started chemotherapy infusions in January. I recieve IV Cytoxan once a month and have had 2 so far with 4 more to go. The chemo will not cure scleroderma but is the standard care to potentially maintain the level of lung function I have. In November my TLC (Total Lung Capacity) was at about 50% and my DLCO (measurement of gas exchange in my lungs) was at about 35%. We hope the chemo will keep my lung function from getting worse and sort of "hold me over" until I can get a more effective treatment.

The part of all of this that I haven't shared with many people is the challenge of being uninsured. It's a very personal aspect of this journey for me, but is necessary to share so that I can explain the possible treatments for me and the reason I have to wait for so long to get them. The truth is, there is a treatment I could receive that if I survived the process, would likely return me to a completely normal life. Stem cell transplants for Scleroderma patients have shown incredible results in reversing the damage the disease does to ones body. This procedure is still considered "investigational" when used for Scleroderma. There are many research studies that offer stem cell transplantation opportunities. The problem is that because scleroderma is so rare and transplants are so costly, none of these studies are funded and the patient must have insurance, be independently wealthy or be able to fundraise the $150,000 it costs for the procedure. The bottom line is that I may have insurance in 4 months or it could take up to 2 1/2 years to obtain. So my challenge is to find a way to not only stay alive that long, but also to stay well enough to receive the transplant.

So I wait. And I continue to research options to maintain and get any sort of improvement in lung function that I can. Roughly 300, 000 people in the US have scleroderma. About 1/3 of those people have diffuse systemic sclerosis (my diagnosis that includes both skin and internal organ invovlement) with 50% of those dying within 5 years. I am in my fifth year of diagnosis, although the severity wasn't known until just a few months ago. I already feel that I have achieved some victories in this journey, considering I still at least appear healthy on the outside.

Scleroderma isn't something I could prevent or predict. I don't deserve it nor do I have a choice. I don't want pity or attention because of it. I only want understanding and support. I have an incredible amount already. Thank you for that. I'll keep you informed.