I'm not sure how to start this. I don't remember what I mentioned in my last post, if I mentioned anything about this at all...
I've been talking to a doctor in London, Dr. Bridget Bax. Mostly updating her on my condition, and asking for details on the latest research and therapies for the disease. Well, come to find out, this therapy costs $6,100 a month. And I would have to travel to London to have it done. Unless of course, arrangements were made for me to have it done in the states, and my insurance would cover some of it... But I'm not sure about any of that yet because I haven't talked to anyone about it. I don't even know if I want to try another treatment attempt, to be honest.
I haven't been feeling too happy lately. Pretty depressed. I sit back and watch my friends back home go on with their lives, taking care of their families, going to school, having fun, etc. It's hard to watch when I feel all alone here. John has his friends, and I have a few people who would visit if I asked, or if they had the time, but I don't want visitors. I want to hang out. I want to go shopping, have fun with my friends. Instead I'm drowning myself in my artwork and internet and video games, and I feel alone.
My problem, though, is that I don't want to go home. I don't want to live there. I'd rather be where I'm already taken care of, with my doctors and everything. There's more to do here...
The last thing I want is a pity party, so I'm gonna stop complaining.
Maybe tomorrow will be better. Terry is taking us up Pikes Peak on the Cog Railway. I've never been, and I'm hoping it won't be too hot or cold for me. I better charge my camera.
Dear sweet Melissa,
ReplyDeleteWith everything you are going through you deserve to have as many pity parties you want. I have them as well and even though I try really hard to look for that bright spot it's not always easy to find. I'm sorry you feel alone that's a feeling I have all to well. If you ever just want someone to talk to I would be happy to just listen and let you vent about it all you want with no judging. I sure love you girl your a inspiration to me I just want you to know that. Love always, Jess Madsen
I have also corresponded with Dr. Bax concerning my wife, she also has MNGIE, We were told the same thing, with the offer to treat her with the new meds, we are also not able to because of family finances, and travel of that duration would not be possible either. I think you have corresponded with my oldest daughter, Jen, and I pray that you and everyone with this horrible disease receives a much needed miracle.
ReplyDeleteGods blessing on you.
Anthony Jaecques