Yesterday was my follow up appointment with the specialist in LA. He gave me a lot of information to digest. I have all my faith and confidence in him so I'm trying not to freak out or over think anything. He believes I have Dermamyositis and not Polymyositis, but I don't have the rashes that comes along with Dermamyositis so it's not adding up. Also, he believes I have Lupus overlapping the Myositis and along with Sjogren Syndrome. He ran even more extensive blood tests and ordered me a high definition CT Scan of my lungs and brain. He also ordered a breathing test because I get short of breath a lot. I have been in a tremendous amount of pain this past week so he gave me some really good pain medicine to help me function throughout the day.
I am trying to stay positive. The IVIG hasn't helped, but it is keeping my CT blood count down and keeping me stabilized. He wants to start me on a treatment that isn't FDA Approved but has an 85% success rate. He is also running tests to make sure I won't get any of the side effects. I will find out the results in two weeks from the blood tests. So yes, a lot to take in!! I have a great family and support team and Dr. V is a great doctor.
I have my first Nerium Real Results Party tomorrow and I'm really excited for it. This is something I can do with my mom and sister. I'm ready to feel like I'm part of society again.
I hope everyone has a great weekend!
Hey Hayley, it's Jenny Heyden. I have been following along with your blog since you started it. I've wanted to reach out to you so many times, but I haven't had the courage to. We lost touch so many years ago and I wasn't sure if you would even want to hear from me. I just wanted to tell you that my heart is broken for you and I think about you often and I hope they are able to get to the bottom of this for you so that you can start enjoying every part of your life again. I know you have an amazing family by your side and they will get you through this, but I wanted to let you know that I'm always here if you want to vent through email or anything. I know it isn't the same thing, but my mom passed away this past year, so I know how it feels to have your whole world turned upside down in a day.
ReplyDeleteI completely understand if you don't want to, or have the time to respond, but I just wanted you to know that you are in my heart, thoughts, and prayers.
Thank You for following my blog and Thank You for reaching out to me. You can't compare our situations. I couldn't even imagine what it must feel like to lose your mom and I am so sorry you have felt that pain. You as well have great family support and I know it has made you guys stronger. I wouldn't mind communicating through email. I feel there is still words to be said and I'd rather keep those between us. Feel free to leave your email address or email me at hayleyw.pm@gmail.com
DeleteThank You for your prayers as well.
Hayley