WHAT IS NEW
Posted by Mark Ghiassi
OCTOBER 10, 2013 UPDATE:
TESTING
My next labwork will be done at the end of the month. I am concerned that we have not started weaning off on the hydrocortisone. We know it will be a slow process but other people have said I should be weaning during these last two months because I am not giving my pituitary a chance to work. So, as you know we switched to a PPO. We have decided to go to UCLA and see the other endocrinologist for more information. We have to get the MRI done, it should have been done in 3 months so we are running a little behind schedule and I am getting more stressed.
DOCTORS
We have an appointment set in two weeks with the endocrinologist we heard at the Cushings Convention. Mark and I have a lot of questions. We need to know if all my hormone are being tested. There seems to be some that are not. We need to know if I should be weaning now even a small dose. We need to know if we need labwork every month because we have to prepare financially for that. I have several symptoms that I had before and we want to know from an expert if this is normal and how is this treated.
DISABILITY
Things are picking up. They arbitrarily scheduled me for a neurological and mental health test. Of course they are on dates that I have the appointment with the specialist. If you don't show up you can get penalized. So now of course I have to get it all rescheduled . This is life. I researched some of the programs that the State of California provided us. Unfortunately, since Mark works we have too high of an income. It is very difficult for a middle income family to get financial support from several of the non profit or even state agencies. Is is like they want you to loose everything before you get help. It is very frustrating and disheartening at times.
EMOTIONAL SUPPORT
As some of you know from my previous posts, I have been trying to find a therapist. And my previous experiences have been bad because I was undiagnosed and the therapist did not understand that I had this chronic disease. Well I am not giving upi I am trying a new one.
Mark and I went to a patient support group the other night. It was not what I expected. I realized that a lot of my support has come from my online support groups and from all of you who write to me when I post. I can not imagine what people dio without friends and family who support them.
I went to church for the first time since my surgery. It was difficult to stand and sit. I mostly sat but it was nice to go and see everyone. My church is very supportive.
I am very nervous about the MRI and the next month. It was about this same time after surgery last time we found out that my tumor was still there. I think about it every day. I try to enjoy the days I am feeling well. But I remember that last time I thought I was feeling well it went wrong.
I have been working part time from my home office doing bookkeeping. I am very lucky that I have my job. There are so many people less fortunate, it really makes a difference in my mental health even though it is less than ten hours a week.
Once again, thanks for your support!
Michelle Ghiassi
