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.

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.

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.

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!

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

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

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