@chicagomichelle, I've not had any of that cake either. Either too full after the meal, or fasting in preparation for next day.
Wow! I hope your weight loss was intentional. My sense reading your posts is that it was intentional, congratulations. That is an awesome accomplishment.
I stay at the Gift of Life Transplant House and my husband and I use the door-to-door shuttle. On a nice day, we will walk to and from the house (April).
I am happy for you that you are making progress and receiving the treatments that you need. Enjoy your downtime! We know that Mayo can and will put you through a marathon of appointments and procedures if you need them.
Stay warm. And enjoy a good night sleep. How early do you start tomorrow?
Rosemary

No, not really intentional. I was on arava for a month and pretty much lost my appetite. I was literally force feeding myself noodles. The drug was a nightmare and made me much worse. My appetite is still very poor after a month off, but I'm not complaining, I needed to lose as the extra weight was not good for my knees anyway.

I drink a cvs protein shake every morning and eat a banana so at least I'm getting some nutrition. My body has been seriously resistant to drugs and I get allll the side effects, and then get side effects from the drugs they put me on for the side effects. I see the pharmacological dept next month, so hoping they can help.

Need to be in at 8 tomorrow as a checker and then a 9:45 appt. And then, back to the Kahler. Hopefully the kids who have been screaming at the top of their lungs in the hallway as they run laps up and down will be checking out in the morning!

@chicagomichelle, Please accept my sincere apology for my inappropriate response. I am so sorry that I made a wrong conclusion. It sounds like you really have a sensitivity to drugs. That must be tough. I admire your attitude; it points to the positive. Please keep working on getting the nutrition that your body needs. I think it is a good thing that you will see a specialist to help you. You are moving in the right directions.
You might want to purchase a pair of ear plugs to ensure a good night sleep. Hope all goes well for you tomorrow. Maybe there will be some music in Gonda lobby to enjoy.
Rosemary

No worries @rosemarya! You didn't know. I'm actually gratefully to have lost that weight, no matter how I had to do it. I needed to as I was up to 192 pounds, which was not good for me. At the height of the huge prednisone doses, I was 235. It's been a nightmare and drugs which I was pretty much prescribed like candy, including antibiotics, biologics, norco, Valium, you name it, have put me here. Not to mention drugs for the side effects of those drugs, essentially putting me in a wheelchair. I've developed ptsd after all that I have been through as a result of my 7 year drugging and all that has happened to my body as a result.

It actually scares me that I now have no pain in my legs as it's like I'm waiting for it to go away and for something else to happen. The last time I came home from Mayo, I stepped on a stair and tore an adductor muscle in my leg and it was the worst pain in my life. I attribute it to levaquin, a drug I had been on 4 or so months prior as a result of another lung infection, due to yet another biologic. I'm trying to take this day by day and not overtax my body in hopes it will come back to me. I will be seeing pharmalogical specialists on my next visit here.

Funny what you said about the ear plugs. I recently bought headset type ones for home as I have 2 neighbors above me who sound like a herd of elephants, 24/7. It's a nightmare. I've been using hypnosis to sleep and I listened to 3 different CDs last night. The hypnotist is Anna Thompson and she is wonderful. You can get her CDs on Amazon. I've found it is the one way I can get my mind to stop. Dr Sood's book is helping me a great deal as well and I feel so lucky to actually be able to take his coarse in person.

I also feel lucky to finally be at Mayo and getting the treatment I need. When doctors would say things like "welcome to old age" at home, I would cringe. I'm 56 years old and should not be in a wheelchair with a crumbling body. My Chicago doctors never drained my knees in 7 years and instead, wanted to give me drugs and send me to shrinks when I cried from severe pain. They didn't listen. One took full advantage of me, in a very personal way, and I believe I developed something very close to Stockholm syndrome in that I continued to see him, even though his treatments were hurting me gravely. What that man did to me was a sin and it was at Mayo that for the first time, a doctor spoke the words, "I am so sorry, that should have never happened to you." I needed so badly to hear that from another medical professional. I actually see him again today and look forward to expressing my gratitude to him.

Instead of the words "there's no place like home" I've replaced them with "there's no place like Mayo" in my head these days. I'll come back as many times as necessary, even if I have to walk here. I'll find a way to make it happen as it is truly my only hope now.

I appreciate this forum as well as it helps to get it all out. I've started cognitive behavioral therapy at home too, and that is also helping me.

Thanks for listening.

@chicagomichelle, I wish for you to have a good day today.
I also want to encourage you to continue looking at some of the discussions where you have made previous posts, and to explore some new ones. You have a wonderful attitude about life and all that you have experienced healthwise. Plus, you have a very enjoyable writing style. I think that you would be able to offer a unique perspective of hope and support to others who are on comparable 'journeys'.
Hugs,
Rosemary