I'm going to post this on Facebook today, but I wanted to let you know I've officially been diagnosed with Multiple Sclerosis. It's really rare to have MS present so dramatically the first time, but with a brain lesion, the fact that I can't walk, and some recent test results, the doctors are certain.
They just transferred me to the acute rehab hospital at Banner Baywood, and intensive treatment and rehab start immediately. Also, an unbelievable miracle ...we got an appointment with the top MS specialist at Mayo Clinic for next Monday. It normally takes months to get in. The girl who helped me book my appointment was completely in shock, saying how she had looked at the schedule only an hour before and there was nothing available. The next possible appointment wasn't until December 21st. Completely amazing, and a strong reminder that we are not alone in this.
Overall, my case so far has been very extreme and unusual, and there have been several unexplained complications that have left doctors confused and wondering if there may be other things going on as well. We're excited to be getting into Mayo so I can get the best care and try to sort out what has been happening in the past several weeks, and figure out how to move forward.
As for how I actually am, and the rehab....still pretty sick overall and exhausted from two weeks of torture and treatment in the hospital. I must have been poked with needles 30-40 times while at Banner Desert. Also, because I'm so young, and because of where the lesion is in my head, they've been giving me nearly experimental doses of steroids. It's been a little much, and that part of the treatment will continue for a few weeks more, and then we'll be able to see how the lesion in my head is responding. I currently can't stand or walk myself, so it's a great thing to be here at the rehab hospital now. It's going to be a rough road, but the Lord has helped us in amazing ways already, and I know he will continue to do so.
Overall, my case so far has been very extreme and unusual, and there have been several unexplained complications that have left doctors confused and wondering if there may be other things going on as well. We're excited to be getting into Mayo so I can get the best care and try to sort out what has been happening in the past several weeks, and figure out how to move forward.
As for how I actually am, and the rehab....still pretty sick overall and exhausted from two weeks of torture and treatment in the hospital. I must have been poked with needles 30-40 times while at Banner Desert. Also, because I'm so young, and because of where the lesion is in my head, they've been giving me nearly experimental doses of steroids. It's been a little much, and that part of the treatment will continue for a few weeks more, and then we'll be able to see how the lesion in my head is responding. I currently can't stand or walk myself, so it's a great thing to be here at the rehab hospital now. It's going to be a rough road, but the Lord has helped us in amazing ways already, and I know he will continue to do so.
I'll keep everyone updated on Facebook as I go. If anyone is not currently connected on FB who wants to be, tell them I'd love to. Just send an invite. Also, I don't have a good collection of everyone's email addresses, so if you know someone not listed here, I'd love to have you forward the message.
Thanks to everyone who has been fasting, praying, and thinking of me. If anyone has questions, wants to talk, email, text, etc, I'm always open to it. In fact, emails, facebook messages, etc have all been really awesome in helping me through the last few weeks. For anyone not on Facebook, my email is mandyclive@gmail.com
I'll try to keep everyone updated.
Lots of love,
Mandy
Oh "My Mandy", I just am so grateful for your faith. It is never easy to hear that kind of news, but you are such a strong person and will sail through this. It's amazing how the Lord works regarding getting into the clinic on monday. That's awesome! love ya dear. Uncle Bart.
ReplyDeleteSending love and positive thoughts your way.. I've been following things pretty closely, but don't think I told you so! You continue to amaze and inspire. You're obviously very, VERY loved. Please bless things continue to come to light so you can get on your way soon. Hooray for miracles, I have a feeling there are even more to come. Much love, dearest Mandy.
ReplyDeleteMandy,
ReplyDeleteAt least you're not in the world of the unknown anymore. When I think of MS, I think of Aselin Maloney - do you know her? She has a remarkable story of MS in her life. She was on heavy steroids this summer also as she had a MS attack again. If you want her number, I will give it to you.
I have a feeling you will handle this with bravery, and a good attitude. Just remember that the Lord does indeed love you through all of this; and so many of us love you as well! I'm sorry you have to deal with this - there aren't any easy answers. Just keep the faith and hope - that's all you can do right now. Keep fighting through it; and it's ok to cry every day.
Sending you white light, healthy and whole energy
ReplyDeleteI'm glad you finally have a diagnosis so you can get the right treatment...although I'm sure it's not an easy diagnosis to have. So happy that you were able to get the appointment you needed! It's always nice to have those tender mercies to help you remember the Lord is mindful of you, especially in the midst of such big challenges. You will continue to be in my thoughts and prayers!
ReplyDeleteWhat a relief to finally have an answer! We'll keep praying for you and I'm sure you will start to feel better quickly now that they have made a diagnosis! Let me know if you want visitors and I'll come see you. Love you!
ReplyDelete