Reply To: Isolation

Sandy-

Isolation is a huge problem for me. I have spent the last 21 months in hospitals and nursing homes. I was in private rooms while in the hospitals and my nursing home roomies have been most non-verbal or non-English speaking. I have no family in the area and only my 91 year old housemate who can only visit me weekly, if I’m lucky, since the only nursing facility that would take me is miles from our home.

It has been an on-going battle to get proper care, and my condition has declined to where I can’t walk. Before I was diagnosed with CIDP, I had a broken ankle from having the paramedics dropping me when they were called to my house because I was too weak to stand up. Complications do to nerve and muscle weakness have led to a contracture. The ankle is turned in and the ortho I saw last month said I should have the foot amputated if I want to walk.

But extreme weakness and dizziness are also keeping me from walking. So I am stuck in my bed with very little interaction with anyone other than phone calls to the housemate. I am so afraid of causing him distress by burdening him with my problems, I just wind up crying in the middle of the night. My level of frustration with my lack of medical care is really getting to me. My physical therapy was just cancelled again on Monday, my one and only IVig treatment was two months ago and the steroids have helped but have made me insulin dependent.

I just want to be able to walk enough to get to bathroom so I can go home. Today, I will have to pay another $7500 to stay in the nursing home. That exceeds my monthly income by $2000, so I can’t do this much longer.

Mid-August I have an appointment with the UC Irvine Neuromuscular Center which may help get some treatment, if I can last that long. I wonder how many of the patients die before their appointments?