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!
Lone Cyprus
Tuesday, August 11, 2009
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
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!
Beth
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
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!
Beth
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!
Beth
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!
Beth
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
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.
Beth
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.
Beth
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.
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.
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