freddiesnetty
Distinguished member
- Joined
- Nov 2, 2007
- Messages
- 241
- Diagnosis
- 12/2006
- Country
- US
- State
- Tx
- City
- Houston
Well I have not gotten online in such awhile I don't know if I can even type....I am sooo tired, We did get power on yesterday after 8 days without. Freddie did ride the hurricane out in the hospital, what a nightmare that was.....The power and the generator went down and it was ugly, raised all kinds of hell with the security guard when the power went out, I do not EVER trust anybody with Freddie's vent. Hospital or not, well he finally let me go outside to get the extra back up batteries for the vent. I do not normally go "off" on people but this idiot got the full rath of netty..........Stupid a@#hole. Well after bagging him and then getting their generator up, I brought EVERYTHING in....portable suction machine and all the crap you tote with that. On Monday they were ready to discharge Freddie at first I was pissed but after running back and forth to keep the house rolling with generators fueled with gas. That was another nightmare......lines for days....I would go back to the hospital to find Freddie up to his neck in urine........I was livid.........He does not have breakdown nor did I want that to start up. Just lazy ass nurses....He did have his eyetracking computer, but that didn't always work........One night he just started crying and begged me not to leave. I went home and gassed and grabbed that air mattress. That was a mess, sleeping on the cold floor just came on through and made my back stiff as a board, not to mention dragging around 5 to 6 5 gallon gas cans on a daily basis.. Well on Tuesday we came home, still no power. That is when the hell began. I had to constantly man those flipping machines. Constant gas fumes, I had forgot to mention during all of this I caught a chest cold........Freddie's wheelchair is here but could not get it till the power came on. I got up first thing this morning and called they are bringing it in the morning I believe........THANK YOU SWEET JESUS! Freddie has still been on his back since JUNE 30th. I was luckier than most. I did have two generators..........WHEW! One morning I got up and refueled and pulled the rip cord and it just kept on going, I looked at this damn thing in my hand and just sat down in the gas that I constantly spilled due to the weight and screamed, I spilled gas alot.......and the best part was the shower after no HOT water, what a wake up that was sometimes at 3 or 5 in the morning......I am grateful that we did get through this alive, I have some friends that lived on the island and are gone. One of them washed up in Beaumont which is about 100 miles away. I did reflect alot on them, it did humble me to know that I at least had my home and our lives, while my friends had nothing.......And I do mean nothing...Their is just debris where their homes used to be. Well yesterday FEMA came to the house and was just amazed to see Freddie at home. I did save EVERY receipt and they said they did not need them. I am hoping they do help out with the purchase of the second generator and all the GAS! They did look at the receipt for that....
I will say to all, I missed all of you here and felt so alone, these idiots don't get the urgency of this disease....hell the FEMA guy was what is that? How do you spell that? Finally I directed him to a picture on the wall of Lou Gehrig and his reply was "Oh the baseball guy disease" I just felt like knocking his head off.........But I did not want to blow my chances for reimbursment that is so needed..............
On a second note just cause you are in a hospital, they do not always know or are prepared. They all laughed at me cause I brought a fan, extension cords, back up vent batteries and portable suction machine......Well guess what I used all of it. I do not give Freddie Jevity, I cook and grind and strain, he eats real food like the rest of it, Well they gave him the Jevity around 8-10 cans a day and couldn't figure out WHY he had diarrhea. And then they kicker they ran out of food for him..........I had to go home and bring some from home there.........They thought I was bossy and told them WHAT to do, well guess what when you have spent 5 years of living in hell with this disease and YOU know what works best then so be it..........
I am too tired to type and my house is a WRECK! I just wanted to drop in and let everyone know that we are alive, I did talk to Irma, she is still without power and is very depressed, she went to the cemetary and the gates were locked , she had told me that some of the graves had floated. I was so distressed when she called I can not remember if she said it was there or not................GOD please I hope not....She is one of the most caring people I know, the day she came to Freddies birthday party, I felt so bad for here, it was like reliving this hell all over again.
Please pray for strength for our beloved friend Irma!
I love and have missed you all..........
califsand...........I have had you on my mind for awhile.........I hope all is well with Dad. You are a hell of a woman!
netty
I will say to all, I missed all of you here and felt so alone, these idiots don't get the urgency of this disease....hell the FEMA guy was what is that? How do you spell that? Finally I directed him to a picture on the wall of Lou Gehrig and his reply was "Oh the baseball guy disease" I just felt like knocking his head off.........But I did not want to blow my chances for reimbursment that is so needed..............
On a second note just cause you are in a hospital, they do not always know or are prepared. They all laughed at me cause I brought a fan, extension cords, back up vent batteries and portable suction machine......Well guess what I used all of it. I do not give Freddie Jevity, I cook and grind and strain, he eats real food like the rest of it, Well they gave him the Jevity around 8-10 cans a day and couldn't figure out WHY he had diarrhea. And then they kicker they ran out of food for him..........I had to go home and bring some from home there.........They thought I was bossy and told them WHAT to do, well guess what when you have spent 5 years of living in hell with this disease and YOU know what works best then so be it..........
I am too tired to type and my house is a WRECK! I just wanted to drop in and let everyone know that we are alive, I did talk to Irma, she is still without power and is very depressed, she went to the cemetary and the gates were locked , she had told me that some of the graves had floated. I was so distressed when she called I can not remember if she said it was there or not................GOD please I hope not....She is one of the most caring people I know, the day she came to Freddies birthday party, I felt so bad for here, it was like reliving this hell all over again.
Please pray for strength for our beloved friend Irma!
I love and have missed you all..........
califsand...........I have had you on my mind for awhile.........I hope all is well with Dad. You are a hell of a woman!
netty
