Thursday, 8/27/09
This has been one of the worst days ever.
Pete is not feeling well at all. He is moving away from me and withdrawing. He is depressed when I am gone in the mornings to work. He is depressed that he has not been able to go home. He is depressed that there has been such a delay in getting treatment and doesn't know what will happen.
Right after we got to the clinic this afternoon I received a message on the cell phone. It was from our pet sitters that said they tried to email us but our email service was disconnected again by Cox on Monday and even though I have put a lot of effort into trying to work with them I don't seem to be getting anywhere.
We have had previous problems this year with our property in Roanoke and now the City is after us again. I just couldn't take anymore! I really fell apart at the clinic. We are losing control of everything and there is no way that we can make people understand our situation here.
When you tell people that you have been here for the past year and non-stop for going on five months now, they don't seem to believe you. They think "cancer" is something that you treat with chemo and/or radiation or cut out the tumor. Myeloma does not fall into that category. There is no cure and it always has to be fought.
I spent the afternoon on the phone between several departments and learned that while I have sent certified mail, letters, and emails NOT A ONE were in our file. The person that had been working with us has gone to Iraq and over all the months that I kept in touch and documented everything, there was no record of any of it. Our letter copies are at home and we have no way to get into email and see sent items either on the Internet or on our computer at home.
I left messages and made call after call and got no where. I tried calling Cox too and had to start over again from everything I had just been told and none of it seemed to be the same as it was two days ago when I was promised service reconnection.
The one piece of good news is that we received a call after this that the drug we've been waiting on has been approved and we will come sign approval on Monday and see the doctor and begin on it on Tuesday.
We were also told that we cannot take this drug at home since it is experimental and has to be dispensed here at UAMS. No sight of home anytime soon and now things are far worse there than ever.
I can't take anymore. I can't keep doing this. We're losing hold of everything and just living in a hotel is getting old with not much on t.v. and feeling trapped in this one room. God, please help us.
Pete is not feeling well at all. He is moving away from me and withdrawing. He is depressed when I am gone in the mornings to work. He is depressed that he has not been able to go home. He is depressed that there has been such a delay in getting treatment and doesn't know what will happen.
Right after we got to the clinic this afternoon I received a message on the cell phone. It was from our pet sitters that said they tried to email us but our email service was disconnected again by Cox on Monday and even though I have put a lot of effort into trying to work with them I don't seem to be getting anywhere.
We have had previous problems this year with our property in Roanoke and now the City is after us again. I just couldn't take anymore! I really fell apart at the clinic. We are losing control of everything and there is no way that we can make people understand our situation here.
When you tell people that you have been here for the past year and non-stop for going on five months now, they don't seem to believe you. They think "cancer" is something that you treat with chemo and/or radiation or cut out the tumor. Myeloma does not fall into that category. There is no cure and it always has to be fought.
I spent the afternoon on the phone between several departments and learned that while I have sent certified mail, letters, and emails NOT A ONE were in our file. The person that had been working with us has gone to Iraq and over all the months that I kept in touch and documented everything, there was no record of any of it. Our letter copies are at home and we have no way to get into email and see sent items either on the Internet or on our computer at home.
I left messages and made call after call and got no where. I tried calling Cox too and had to start over again from everything I had just been told and none of it seemed to be the same as it was two days ago when I was promised service reconnection.
The one piece of good news is that we received a call after this that the drug we've been waiting on has been approved and we will come sign approval on Monday and see the doctor and begin on it on Tuesday.
We were also told that we cannot take this drug at home since it is experimental and has to be dispensed here at UAMS. No sight of home anytime soon and now things are far worse there than ever.
I can't take anymore. I can't keep doing this. We're losing hold of everything and just living in a hotel is getting old with not much on t.v. and feeling trapped in this one room. God, please help us.
posted by BethPowell at 9:44 PM
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