PART 9: UPDATE

July 17, 2013

Posted July 18th, 2013 by Mark Ghiassi

TIME WILL TELL

It is very difficult to be patient as to recovery since this disease is not simply cured. It takes a long time to recover. It took three years to get this point so it will take a long time to fix everything that the cortisol was masking. 

MEETING WITH SPECIALISTS AND DOCTORS

Mark and I met with all of my doctors. The next labwork is at the end of the month. Pretty much everything will be tested. Cortisol, ACTH, CBC, anemia, vitamin D, etc. An MRI will be done in three months. 

LAST TWO WEEKS

Recovery takes at least a year. Monthly testing and reducing the cortisol and having withdrawal symptoms every time we taper down.  They must determine if the pituitary is working now that it has “been on vacation” because of the tumor. 

Mark and I have been going around my neighborhood in the wheelchair and I am getting out of the chair and then walking periodically. I  have been out of the house about three times. I have actually been able to focus and read a book in one day, like I used too. This is a good sign. I only get lightheaded/dizzy when I bend or lift something that I am not supposed too..like my 17 pound cat :)  I am not overdoing it, I really am being very careful I want my recovery to go as well as possible.

Mark said I don't complain at a lot so it's hard to describe my day. Since surgery, my muscles, bones, and joints are way more weak than before, hence the wheelchair. I am beyond ordinary fatigue. Mark said before surgery I would sleep like two hours in the day, now I take naps of like five hours. Going out or performing an activity really tires me out. 

It's hard to really know the difference since this is the second surgery. I thought I was in recovery before and wasn't so I really am confused. I will feel better as we keep testing.

INSURANCE UPDATE

I am still trying to have people sign my petition and the company is going to try and help us with media coverage on this issue. My specialists are willing to help too. So keep getting people to sign if you can. 

Please join this campaign: http://chn.ge/16BXiU7  This was created to fight Blue Shield, we are trying to get signatures.

DISABILITY UPDATE

No information on my appeal at this time. It is all pretty overwhelming trying to get doctors to coordinate, send in all my tests to disability, etc meanwhile trying to recover. 

Any donations are still appreciated, Mark and I have used our entire savings and will be paying off credit card debit from the surgery with the money that everyone has donated. So thank you all for everyone.

Sincerely,

Michelle and Mark