Things Continue To Fall Apart

At some point in my past I broke my right wrist and now the healed break has calcified and rubs on a nerve causing me considerable pain. This wasn't a problem when I was able to take arthritis medicine. However, taking the arthritis medicine has caused bleeding in my stomach so a couple of years ago the doctors told me no more arthritis medicine. The pain medicine I now take for the neuropathy pain helps with the arthritis pain. However, it doesn't help with the pain in my right wrist. The doctor recommended I wear a brace on my right wrist which has really helped because it doesn't allow me to move my wrist preventing the calcified break from rubbing on the nerve.

Also, because of all the hip operations I have had and because of the Spinal Cerebellar Degeneration I used cane in my left hand for 20 years. Using the cane has caused a narrowing in my left shoulder joint. And because of the trouble I have with my right wrist, I have favored my right wrist when pushing myself up in my recliner and wheelchair. Over the years, I have noticed more and more pain in my left shoulder, and recently it has gotten extremely painful. So painful that I now find myself favoring my left arm putting more pressure on my right wrist. A couple of weeks ago I saw my doctor who gave me a Cortisone shot in the left shoulder and ordered X-rays of the left shoulder. This past Tuesday the doctor called to tell me I have a badly damaged Rotator Cuff. And because of the Spinal Cerebellar Degeneration I am not a candidate for Rotator Cuff repair surgery. The doctor did order Physical Therapy which will start this coming week.

Even though my shoulder is extremely painful, I do find it rather fascinating how our bodies are created. Used as a complete whole our bodies work well. Every part of our body seems to work with every other part and when one part is damage the other parts will carry the extra work. However, eventually the extra work causes additional problems. I am not certain how this is going to end up. I am hoping the Physical Therapy will strength my shoulder and help relief the pain.

The Time Has Finally Arrived

Four and a half years ago when I first talked to my doctors about needing a tracheotomy and ventilator to aid my breathing, the doctors all told P and I that once I had the tracheotomy and was ventilator dependent, I would require someone with me at all times. However, because of the costs of having an aid here while P was at work, I've managed to stay home by myself. At first I was able to do the laundry, make the evening meal and go for long walks, using my wheelchair of course. During the first two years using the ventilator we took a number of vacations, one flying to Las Vegas. On September 17, 2007 I even participated in a 5K event. And I was able to take an active part in leading the Mini-Church that meets at our house.

I slowly became less able to do these things as the disease progressed and I became weaker. At first, I stopped doing the laundry but would still be able to fold the clothes. I no longer had the strength to prepare the evening meal but would still be able to take some prepared meal out of the refrigerator and place it in the oven. However, during the past 12 months both P and I have noticed that I tire much easier and it was becoming more and more of a problem for me to even fold a basket of clothes and getting into my wheelchair to even take something out of the refrigerator and place it in the oven. Now I often have to take a nap after getting up in the morning and having breakfast and doing normal morning things and again when the aid comes to help me with a shower. No more vacations, no more 5K's and I am no longer able to take an active part in leading the Mini-Church. In fact I often spend the time they are here either in bed or in the other room.

I now have arrived at the point where I need someone here when P is at work. Fortunately, P works for a great company and while she has to pay a lot for our share of the health insurance premium, it is excellent health insurance. Because it is such an excellent health insurance policy and because of my extreme illness the health insurance will help pay for a full time nurse to be here on the three days a week that P works a full day. We will have to pay 20 percent of the cost for having the nurse here for those three days a week. On Fridays when P works from 1 PM until 7 PM we have contacted another health care agency who will provide a CNA. The CNA will be here from 2 PM until 6 PM and will help get me supper and help me into bed.

Both the nurse and the CNA will do things like get meals for me, do my laundry, make my bed, order my medical supplies, do my tracheotomy care and do the many other things the P has been doing for these past number of years. Hopefully this change will make life easier for P. She will no longer have to help me get dressed, prepare my lunch in morning and place it by my chair and get something for supper started, while she is trying to get herself ready for work.

Of course having the nurse and the CNA here for the hours P is at work, even with what the health insurance will pay, will cost us thousands of dollars a year. I suppose this is the reason we worked so hard to save our money. However, I am very concerned that P have enough money for her retirement.

P and I always knew we would reach this point and now it appears that we have.

More Wheelchair Delays

A month ago on February 04, 2010 we received an email from Rehab Tech, in response to our email asking when we could expect the wheelchair to be shipped from the manufacture, stating the manufacture gave them an estimated ship date of February 22, 2010. On Friday February 26, 2010 we sent Rehab Tech an email asking if they had received the wheelchair. We were shocked to receive a response stating the wheelchair hadn't been shipped and that the manufacture was not able to give an estimated ship date.

We decided to call Rehab Tech and discuss this problem with the branch manager. When he called us back he told us that the order for the wheelchair had been place on January 13, 2010 roughly two weeks after P. and I thought it had been ordered. It turned out that the delay was supposedly caused by a dispute with the insurance company about some labor charges in the paperwork Rehab Tech had submitted to the insurance company. Both P and I remember calling Rehab Tech and asking our contact person at Rehab Tech about that labor question because it was in the copy of the information the insurance company sent us. However, the contact person said that it wasn't a problem and had been resolved. After talking to Rehab Tech earlier this week, we now have no idea when to expect the wheelchair to be shipped from the manufacture.

On February 16, 2010 P contacted the Rehab Tech technician asking him what the process would be once they received the wheelchair. He responded by telling us that once they received the wheelchair it would be put in their work queue and when they got to it, they would make the additional modifications adding the special features I would need. He requested that I travel to their Naperville, IL office with an external ventilator battery, and the humidifier I must use, so they could make certain the additional modifications would be correct. Then after all their work on the chair is finished we would have to make an appointment with the Rehab Institute of Chicago so their physical therapist could make certain that everything was done correctly.

When I asked if we could make the appointment with the Rehab Institute of Chicago as soon as Rehab Tech received the chair, I was told "Typically, they didn't do that." They would only make that appointment after all their work was finished. However, because of the all the delays getting this wheelchair ordered I am still going to push with setting up the appointment with Rehab Institute of Chicago as soon as the wheelchair and all the additional parts arrive at Rehab Tech. I feel that because it took Rehab Institute of Chicago a month to get their letter of medical necessity to Rehab Tech and then it took Rehab Tech a week of faxing that letter to my doctor and my doctor telling me that they never received it nor had they heard from Rehab Tech. We finally had them fax that letter to P. at her work and we hand carried it to my doctor to get it signed.

It is because of all these delays and apparent lack concern on both Rehab Institute of Chicago and Rehab Tech that we are going to really push for special attention once they receive my wheelchair. So I have no idea when I will receive this new wheelchair. However, once I have it I plan on submitting some letters of complaint to Joint Commission on Accreditation of Healthcare Organizations (JACHO) about both companies. I also intend to ask to see where my medical information was being faxed to during that week when my doctor never received it until we hand carried it to the doctor. I believe that under Health Insurance Portability and Accountability Act (HIPAA) I am allowed to see where they sent my information. If they sent it to the wrong fax number I am going to submit a letter of complaint to HIPAA.

I feel that I have been more then patient with both companies. My first appointment was on October 15, 2009 and now almost 5 months later I still do not have my new wheelchair and no one can give me an idea when I might expect to receive it.