So as far as an update goes… I am not running fevers anymore! Yay! And I am starting to show improvement in my skin. I am still in the hospital and not 100% better yet, but I'm getting there. I am possibly coming home later this week!!! My doctors in MN were able to communicate with the doctors here and I think that helped a lot. I am so thankful for that. I am not able to go up there for treatment yet due to the fact that my insurance will not cover me there.
And I just want to address some issues that have been bothering me for the past couple days..
First of all I'm very upset with all the drama/attention that is going around on FB right now. I don't even know how to put it into words. I don't want to sound ungrateful or selfish. I know the gofundme site was set up with good intentions. The funds are being used appropriately to help my family. Don't get me wrong, I am so so thankful that you all are able to help my mom and family out because she is struggling and really does need a car but enough is enough. I don't want this to go viral. I am not dying here, ok? Yes, I am fighting a hard battle and it was scary but I was a lot more sick when I was going through the BMT in MN than I am now. I will win this battle. I always win. This is a piece of cake compared to what I've already been through. E.b will never get the best of me; It NEVER does! And I am not some charity case and didn't sign up to be one. And I don't want anyone to see me in that kinda light.
Furthermore, I am 18 fricken years old now and I am my own person and I have the right to choose whether I want every single detail of my personal information being shared on the internet. If I wanted to share it I would've by now. But I don't want to and it bothers me that some people can't respect that.
On fb, every time someone shared the tlc thing, the fundraiser thing, or tagged me in either one, I would see it and reading some of the posts people wrote when people shared that link just made me kind of sad/mad/depressed. I don't know how else to explain it. It really got me down. I don't want anyone to take this the wrong way, I am happy to spread awareness for e.b. and some of the things people wrote were very, very sweet and I appreciate you all wanting to help, but I DONT' WANT IT TO HAPPEN IN THIS WAY. I felt like people thought that I am literally fighting for my life. I was really sick but I wasn't fighting for my life. I am fine. And I will be fine. I deleted my fb for several reasons, but it is back up now.
Second, there were some things being said about my dad. And he gets left out of the picture a lot. This one especially pissed me off the most. My sister and brother and I, all live with my dad 50% of the time. Mon, Tues, Wed till 6pm and every other weekend. He doesn't have to pay child support because we live with him too. We live with my mom 6pm Wed. to 6pm Fri. and every other weekend and holidays/birthdays are shared. Yes, he works too and he doesn't get home till late but he does the best he can. I feel like he's made out to be this 'bad dad' and 'he left us' but he isn't and 'he' didn't. He's a really great dad.
And Im not trying to start any more drama, I just wanted to get this off my mind. I hate drama. And would like to ask you all to please just stop.
Lastly, I know plenty of adults with e.b. in their 20s, 30s, 40s, married, some with kids, and still living life to the fullest. And I want to say Thank you to them, because they have given me hope for my future and proven its possible. Anything is possible. Thats going to be me one day, I promise. And I don't break my promises. lol.
"I can do ALL things through Christ who gives me strength."Philippians 4:13
I am sosososososo very thankful for all the prayers, love, and, support!! Thats what means the most!!
And I would like to send a whole bunch of love and prayers to my brave friend Hannah, who is sick right now too <3 you can follow her story here-->> http://www.acureforhannah.com
Love,
Sam
Sam - YOU AMAZE ME! That's it...nothing else but AMAZE me! If there's one thing I've learned from quietly watching my own daughter & others that deal w/what she deals with is they live life MUCH MORE fulfilling than any other being on this planet!!! Thank you for your straight forward head strong words!
ReplyDeleteHey Sam...well I think I owe you an apology...the TLC thing was sent to us and we share whatever we can on The Butterfly Fund's page. Then a friend of yours said you were in the hospital not doing well and that the family was struggling so we left the post and posted the fundraising page for you as well. NEVER in a million years would we do any of this to cause you stress or drama, we just wanted to help where help was told it was needed. We COMPLETELY understand the whole media hype that can happen and Im truly sorry if any of this did happen, Our only intention was to share the page that was already set up. I hope you get whatever you NEED to make your life complete ( you sound pretty awesome) and know that we never meant any harm or undue notariiety- we just kind of cared <3
ReplyDeleteGod Bless You Girlie. I thank God for you. You inspire the younger kids with EB,
ReplyDeleteIt's fantastic that you are able to speak your mind and take control of your life! You sound like a pretty awesome 18 yr old, know that people are following and/or donating to your family out of caring and compassion. All the best! The Unique Life of Mr.B
ReplyDeleteI am glad you are on the mend- praying you get home ASAP.
ReplyDeleteI'm thankful to see you are feeling better! Continued prayers for you & your family!!
ReplyDeleteHappy to read you are getting better. That your doctors from different places can talk together and work on a treatment for you.
ReplyDeleteWill continue to pray for your recovery from yet another slow down. sg-KS