The Sky Is Falling!

Friday, April 16, 2010 – 11:35 A.M.
Just when I thought things were starting to get better in my life, the roof fell in. I should have expected that based on the way things have gone in the past, but I have really tried to think more optimistically in recent times. I guess it just goes to show that maybe I should not even try to "think" these days.
The first thing that went wrong was that my wheelchair quit running. Actually, it ran for a few hours, and then stopped. If I waited a few minutes, or longer, it would start running again, only to stop once more. This pattern went on for a few days until I finally called for help.
A local company sent someone out to make some repairs. The repairs were made and he left. A few days later the wheelchair started acting up again. The service technician has been here twice, and today he is due to come again. I am beginning to lose whatever amount of faith I had in him. If things do not work out this time, then I am going to look for another company.
While this was taking place, the air mattress on my bed quit working. I had gotten the mattress from a company that is no longer in business, and there is no other dealer in the Denver area, so I grew frustrated with trying to find someone to make repairs. I turned the matter over to the social worker at my doctor's office who was more than happy to help me. At the same time, unknown to me, my home healthcare nurse decided to make some inquiries of her own in order to find another mattress for me.
The social worker was unable to find another company that could supply me with a similar mattress overlay, so she suggested (via e-mail) that I might want to check with a company known as RTG Rehab. While she was doing that, my nurse had made contact with another company known as Apria, which said it had exactly the mattress I needed, and did, in fact, have one in stock. The home healthcare nurse called my doctor about it, but his nurse, named Wally, said that was not the mattress which my doctor wanted me to have. She then provided my nurse with the name of the exact mattress as well as the model number, etc.
I had been unable to get back in contact with my social worker because of some computer problems, so yesterday morning she called me by phone. I advised her of what the nurse had done, and I said that it was my impression that the medical supply company was waiting for clearance from Medicaid. My social worker said that she would contact the company just in case they needed additional information from my doctor's office. As of today, I have not heard from anyone. I feel as though I have been left out of the loop. Because of that, I have written to my social worker asking her to advise me as to where everything stands.
The next thing that went wrong was that my automatic door opener quit working properly. It is only supposed to open when I push a button on a small black box that I carry with me at all times. For some unknown reason, the door began opening at different times during the day and night. It is a creepy feeling to have your front door open at two or three in the morning entirely by itself.
I contacted my case manager and told her about the situation. She said she would do something about it right away. That was nearly 3 weeks ago. I called her again this week, and she said that because she was having some marital problems, it caused her to forget about my phone call to her, as well as other problems that some of her clients were having. She did manage to send out someone to look at my door this week. It was a young person who took down all the information she could find on the door opener itself. She said she would report to my case manager, and that I should hear from one of them within a couple of days. Since my case manager is having some more personal problems, she will not be back for a week or more, so I am quite sure it will take a while longer before I hear from her again.
While I was writing this journal entry, a service technician came to look at my wheelchair. He found one of the wires, which operates the tilt control, had frayed and was about to break entirely. After calling the company that made the wheelchair, he disconnected that wire. He cautioned me that I could still operate the chair, as well as the tilt function, but until he got a new part, my chair would still move even if it were tilted backward.
Two nights ago one of my hearing aids quit working. I changed the battery in it, but that did not solve the problem. I tried a second new battery, but that did not help it either. It is quite clear to me that whatever is wrong with a hearing aid has to be repaired either by an audiologist or by someone who works on hearing aids
My sister has volunteered to take my hearing aid to the audiologist I normally see in downtown Denver sometime this afternoon. If some dirt just needs to be cleaned out of the inside of the hearing aid, I am hopeful that I will get that hearing aid returned today. However, I have a feeling that I will not get off quite so easily. I believe that the problem is more serious than that, which means that it will probably take much longer to fix.
On a more personal note, I am also having difficulties with some bowel problems. I have been constipated for about two weeks. I have been using various medications prescribed by my doctor, but nothing seems to be helping me. I am not sure what is causing this problem, but whatever it is, is also causing me not to want to eat very much.
I have not seen my physical therapist for nearly 2 weeks. This has not been helping my back pain. The amount of pain I am having has been fluctuating up and down. While the pain medication helps somewhat, it does not stop the pain entirely. Tilting my chair back also helps to a certain degree, but I do not really like leaning backwards and looking at nothing but the ceiling. I think I am beginning to go stark raving mad!
The way things are going right now, I think I can honestly say that life sucks.




And... sigh...

Hugs and Mojo

Hi Jim Boy You sure have lots happening. I\'ve felt the same way you do now, I say how can I have so much Drama in my life. When i barely leave my home.Sometimes its seems like everything in the house quits working at the same time and house is attacking you. Hope things get better soon, Hang in there-Stephanie

I just got a really awful feeling about how damaging all this bureaucracy is. How could anyone remain positive?

I hope you can forgive my comments if they are ever insensitive to how much you go through, Jim. I want to grasp it. My thoughts always go to how to make it better for you.

It seems to me that you need a full-time advocate. People are not realizing the seriousness of your problems. Your door is opening in the middle of the night and someone forgot to fix it? Are you kidding me?

Is your sister any good at handling these things or would she just make it worse? Is there an advocacy group you can make a complaint to?

\"It seems to me that you need a full-time advocate.\"

That\'s the exact same thing my sister has been telling me. Unfortunately, my case manager is \"supposed\" to be my advocate, but she is also the person who forgot to get someone to fix my door so it won\'t keep opening at all hours of the day and night!

\"I hope you can forgive my comments if they are ever insensitive to how much you go through,\"

You\'ve never come across as seeming insensitive, so there\'s nothing to forgive.


And... sigh...\"

Can I quote you? Oops! I just did.

\"Boy You sure have lots happening.\"

Wait until you hear what happened this morning. lol Will try writing about it for tomorrow.

Some days life truly does suck, and anyone who doesn\'t admit that is either an idiot or a hypocrit.

I am sorry you got all this crappy stuff going on right now, when it rains it pours doesn\'t it.

wow, your case manager \"forgot\" about your door problem due to her marital problems? I\'m a case manager myself, but in a different setting, so I don\'t want to condemn others to much, but I don\'t think I would forget a thing like that.