The Frustrations
Have you ever thought about what it would be like to have to run your life by another person’s schedule? I know that we all have to change our schedule occasionally to fit it around someone else. However, how would you feel if you ended up doing that most of the time? I imagine that is one of the things prisoners don't like about being incarcerated, the having to conform your everyday schedule to that of the institution?
I have thought about this a lot over the past couple of years. Then these past few weeks it was really brought home to me. I began thinking about this again when it seemed that Rehab Tech couldn't seem to get the Letter of Medical Necessity faxed to my doctor. The person at Rehab Tech would say that it was faxed and the person at the doctor office would claim they never received it. My wife P would try to find the time at work to make some hurried phone calls to try to resolve this issue. I, because I am not able to talk easily, sent emails to Rehab Tech which were not answered for long periods of time. Finally one day when the doctor office called to say that they still hadn't received the Letter of Medical Necessity, I asked for her phone number and fax number. I sent this information to Rehab Tech asking them to please call the doctor office to coordinate the sending of the fax. This past Monday, when at the doctor office, I asked the person if Rehab Tech had ever contacted her. She said no she never heard from them. Fortunately P asked Rehab Tech to email the Letter of Medical Necessity to us which we printed and brought along Monday for the doctors signature.
When we read through the Letter of Medical Necessity we discovered that the Rehab Institute of Chicago (RIC) had the wrong office address and fax number for my doctor. They had the information for the practice she used to work at. Now if I were able to talk on the phone I would have called the person at Rehab Tech and asked her to read the fax number to me. However, because I am only able to send emails, which Rehab Tech, when they finally replied to them, would say "I faxed the Letter of Medical Necessity to your doctor and haven't heard back from them" never writing down which fax number they sent it to. If I had received the fax number Rehab Tech was sending my Letter of Medical Necessity to I would have known they had the wrong number. Now that I've written this information, I believe that it is against Health Insurance Portability and Accountability Act (HIPAA) to fax my health information to a doctor without first calling to find out if you have the correct fax number. The frustration I feel at not being able to pick up the phone and talk for more than a few short sentences or words is immense.
This past Monday morning I had a doctor visit scheduled for 11AM. About 9 AM I remembered that I hadn't received an appointment reminder phone call so asked P to call their office and make certain I did have an appointment for 11. When she called they told her that I wasn't on the schedule and that the doctor no longer had Monday office hours at the office closest to our home. However when P pushed for more information and informed them that we had the card with the appoint date and time on it, the doctor office finally admitted that they had switched to a new computer system and my information must not have transferred from the old system to the new one. They said they would "squeeze" me in at 5:30 Monday evening. As the day progresses, my level of energy decreases to such a low level that by late afternoon I am totally exhausted. The doctor office informed P that it I could come at either 5:30 Monday evening or 6:30 Wednesday evening. When I heard that I exploded with anger. If I had been able to talk I would have explained to the doctor's scheduling person that such a response wasn't acceptable. I would have insisted on talking to the office manager and expressed my anger to that person. Once again I am confined by other people. I can't expect P to stop everything she has to do, remember she is doing everything around here I can't help at all, and argue further. So we took the 5:30 appointment. I am ashamed to admit, that when we arrived at the doctor's office, I had some strongly worded sentences with the poor office girl. I know it is a feeling of helplessness that makes me become so angry about situations like these. I get frustrated because I know how I would like to handle situations like these only because of a physical weakness can't.
Now I finally arrive at the event that caused me to write this. This morning at 11AM I received a phone call from a home aid telling me that she would be here at 12 noon to help me shower. Now I know I could have said "No that won't be convenient because I am planning on eating my lunch at noon". But this isn't my normal home aid; my normal aid was involved in a traffic accident yesterday so the other aids are taking extra patients. So I said yes I could make a noon shower work.
It's not the issue of the home aid coming when I would normally have lunch that is frustrating. It's that I don't have the freedom to decide when I want to take a shower. It's the fact that I need to have a home aid that is frustrating. It is the having to rely on someone to drive you to the doctor and so the doctor appointments are made when it works best for someone else. It's not being able to pick up the phone and talk to someone to try to resolve an issue so I must rely on emails which are easily ignored. It's the fear of total mind and body numbing exhaustion if you do too much, so you soon find yourself afraid to do much of anything. It's the aggravation of not being able to help around the house. Not being what I consider an active, helping team member. It's all of these things plus the many other little things someone with a chronic illness find that they no longer can do
I have thought about this a lot over the past couple of years. Then these past few weeks it was really brought home to me. I began thinking about this again when it seemed that Rehab Tech couldn't seem to get the Letter of Medical Necessity faxed to my doctor. The person at Rehab Tech would say that it was faxed and the person at the doctor office would claim they never received it. My wife P would try to find the time at work to make some hurried phone calls to try to resolve this issue. I, because I am not able to talk easily, sent emails to Rehab Tech which were not answered for long periods of time. Finally one day when the doctor office called to say that they still hadn't received the Letter of Medical Necessity, I asked for her phone number and fax number. I sent this information to Rehab Tech asking them to please call the doctor office to coordinate the sending of the fax. This past Monday, when at the doctor office, I asked the person if Rehab Tech had ever contacted her. She said no she never heard from them. Fortunately P asked Rehab Tech to email the Letter of Medical Necessity to us which we printed and brought along Monday for the doctors signature.
When we read through the Letter of Medical Necessity we discovered that the Rehab Institute of Chicago (RIC) had the wrong office address and fax number for my doctor. They had the information for the practice she used to work at. Now if I were able to talk on the phone I would have called the person at Rehab Tech and asked her to read the fax number to me. However, because I am only able to send emails, which Rehab Tech, when they finally replied to them, would say "I faxed the Letter of Medical Necessity to your doctor and haven't heard back from them" never writing down which fax number they sent it to. If I had received the fax number Rehab Tech was sending my Letter of Medical Necessity to I would have known they had the wrong number. Now that I've written this information, I believe that it is against Health Insurance Portability and Accountability Act (HIPAA) to fax my health information to a doctor without first calling to find out if you have the correct fax number. The frustration I feel at not being able to pick up the phone and talk for more than a few short sentences or words is immense.
This past Monday morning I had a doctor visit scheduled for 11AM. About 9 AM I remembered that I hadn't received an appointment reminder phone call so asked P to call their office and make certain I did have an appointment for 11. When she called they told her that I wasn't on the schedule and that the doctor no longer had Monday office hours at the office closest to our home. However when P pushed for more information and informed them that we had the card with the appoint date and time on it, the doctor office finally admitted that they had switched to a new computer system and my information must not have transferred from the old system to the new one. They said they would "squeeze" me in at 5:30 Monday evening. As the day progresses, my level of energy decreases to such a low level that by late afternoon I am totally exhausted. The doctor office informed P that it I could come at either 5:30 Monday evening or 6:30 Wednesday evening. When I heard that I exploded with anger. If I had been able to talk I would have explained to the doctor's scheduling person that such a response wasn't acceptable. I would have insisted on talking to the office manager and expressed my anger to that person. Once again I am confined by other people. I can't expect P to stop everything she has to do, remember she is doing everything around here I can't help at all, and argue further. So we took the 5:30 appointment. I am ashamed to admit, that when we arrived at the doctor's office, I had some strongly worded sentences with the poor office girl. I know it is a feeling of helplessness that makes me become so angry about situations like these. I get frustrated because I know how I would like to handle situations like these only because of a physical weakness can't.
Now I finally arrive at the event that caused me to write this. This morning at 11AM I received a phone call from a home aid telling me that she would be here at 12 noon to help me shower. Now I know I could have said "No that won't be convenient because I am planning on eating my lunch at noon". But this isn't my normal home aid; my normal aid was involved in a traffic accident yesterday so the other aids are taking extra patients. So I said yes I could make a noon shower work.
It's not the issue of the home aid coming when I would normally have lunch that is frustrating. It's that I don't have the freedom to decide when I want to take a shower. It's the fact that I need to have a home aid that is frustrating. It is the having to rely on someone to drive you to the doctor and so the doctor appointments are made when it works best for someone else. It's not being able to pick up the phone and talk to someone to try to resolve an issue so I must rely on emails which are easily ignored. It's the fear of total mind and body numbing exhaustion if you do too much, so you soon find yourself afraid to do much of anything. It's the aggravation of not being able to help around the house. Not being what I consider an active, helping team member. It's all of these things plus the many other little things someone with a chronic illness find that they no longer can do
posted by UP at 11:18 AM
1 Comments:
I am so sorry that you have to go through all these frustrations which are much more than the ones that are making people without any special difficulties already upset. You have a lot more reasons to be upset.
Still, I think from my own experiences, it is somehow necessary to learn ways to not be so frustrated. (Please don't be offended. I don't want to sound so preachy!) I have found simple breathing meditation where I concentrate on my in breath and out breath for a few minutes, can slowly calm me. I try to look around for blessings to count, for something beautiful in the environment, or some person who is helping a lot and be happy and grateful for such things. When my husband was ill and dying, there were a lot of difficult times when I (the well person) couldn't really makes things go the way I thought was right for my husband, usually because of hospital or nursing home rules........Does your insurannce have any sort of case manager or ombudsman? If yes, maybe they could take over dealing with some of these things to give you and your wife a break. I was really glad to hear the wheel chair business is moving slowly, even if it must feel a bit like molasses in January! I keep you in my prayers.
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