I want to let you know that at the moment, and for the past few days, my headache is not as bad as it was. It’s tolerable, thankfully. I’m no longer taking any medicine specifically for the headache pain, other than my regular pain medicine for my abdomen. The other side of that is that my abdominal pain is getting worse again and it’s getting a bit more challenging to eat. I will talk with Hospice and we will work on trying to get this resolved, when the time comes to do so.
The prayers and thoughts you are sending my way are greatly appreciated.
As my health and time permit, I will keep adding stories and keeping you updated on my life and activities. I just wrote the story I started a week or so ago when I posted puzzle pictures and links, it’s in the story below. Today, I also started another story to post. I hope to post it in a day or sometime this week. I have worked on a few stories today and spent many hours typing. Since it will take a few more hours to post the story and add photos, I decided to save it for another day. Please excuse any typo’s and grammar errors. Time to rest now. By the way, I’m using the voice feature on my phone to write text and answer emails, rather than turning on my computer often. So, please also excuse errors in these messages. Thanks.
Many years ago I decided to take a proactive role in my medical care, I have found it extremely necessary to do so after contact with many doctors and many hospital stays. It’s important to know what is being done to us, and why. Ask what each medicine is for, will it interact with other medicines. Lots of doctors want to run tests and have x-rays, scans, and other procedures done which are not always necessary. Remember that several tests and scans use radioactive and other chemicals which will affect your body or be injected into your body in some way. Ask questions and if you are not sure it’s right, keep asking why or what it will accomplish or show as a test result. Perhaps there are alternative ways to determine the same thing.
Remember it’s okay to say no to a doctor. There are many times over the years that I have said no, I will not have that test, injection, etc. when I felt it was unnecessary or not something I want done to me. We have choices. Believe it or not, I have had several doctors over the years that said they would not take care of me as a patient any longer because I questioned them. One wanted to do experimental surgery and I told him no. I found a different doctor that used a different procedure and I had a better result. Another wanted to run a series of x-rays just because he wanted to know what was happening with my body. There were no health issues at that time. I didn’t feel any tests were necessary. Another time, a doctors assistant wanted me to take a laxative before a procedure. I told her that I have an illeostomy and cannot use laxatives. She insisted that I need to take it. I insisted that I don’t. Finally, I told her to check with the doctor, and she came back and said I was correct. This is just one example of why it’s necessary to be proactive in our health care and of those we love and care about.
Don’t be concerned if a doctor doesn’t like to be questioned, ask them why. Then decide if you want to keep that doctor or look for a different one. There are plenty of doctors that like patients to ask questions and be involved in their own care. You may have to search to find one, but it’s definitely worth the search and effort. Another thing I found out is if I go for a 2nd opinion, it’s an option to go to a doctor that is recommended by a friend or someone you know. There are times I did go to a doctor or dentist that my health care provider recommended. Other times, I found that finding an independent medical person had a different outcome that I felt was a better alternative for my treatment.
In 2012, I was having some dental issues and I went to my dentist. He told me what he thought was wrong and recommended a periodontist. I went to the recommended oral surgeon. The cost estimate he gave me for a long list of procedures he wanted to do was more than $12,000 for dental work, bridges, implants, etc. I thought I could buy a really good used car or go on several nice trips for that money. I went to several more dentists and oral surgeons and finally, I think it was the 6th one, said we can try a procedure that would be significantly less invasive, and costly. He told me that he tried it on a few other patients and it bought them several years or longer with successful results. I said let’s do it. If it works for several years I would be happy. So, we coordinated with my regular dentist since a special filling was needed. I had the procedures, the cost was about $4,000, and now almost 2 years later it’s still successful. I will say that it was painful, and it took a couple of months between the procedures and healing process. If I did the initially recommended procedure it would have been more invasive, complicated, and more painful… not to mention lots more costly. I didn’t feel like paying for car or house payments and vacations for the oral surgeons. They wanted to charge about $1,600 for about an hour or hour and a half work. I asked why their cost for the procedure is so high. They tried to justify it, I didn’t buy their reasoning. I think it’s the risk they are taking for drilling into our mouths, jaw, etc. Guess it covers their insurance costs?
As for Hospice, I entered the VITAS Hospice program on January 8, 2014. You may have read about it in a previous post. The primary reason I signed up for this service is to help me get the medicine I need to manage my pain and other symptoms. I am still able to get out and about by myself and take care of myself. I also thought it would be good to have in place for when it’s needed.
After a few weeks on Hospice, I was having some issues with staff members. For example, I wanted to go away for a week. The nurse said it was fine and we scheduled the visits with her so that I would still see her once each week. The social worker said since there was not a VITAS Hospice where I was going, which was about 200 miles away, that I would have to sign a form and leave the program and enroll again when I came back. There were also other personnel issues like the nurse not following through with me on things she said she would. Anyway, I was getting upset because I was being told contradicting stories. There is more to this but I prefer not to get into the details, other than to say I was getting very upset and stressed and I realized I didn’t need to be.
I went to my doctors office and told them all of the problems and issues I was having and they agreed that this should not be happening. Earlier this year, before needing Hospice services, I interviewed several Hospice providers. VITAS that I am using is not my first choice. I am using it only because my doctor told me if I use this provider that she can still be my primary doctor. For some reason her office has a good relationship with this provider and they have more flexibility with my care and oversight of my case. My first choice provider is in the next county and not in my doctor’s jurisdiction. Because it’s important to keep Dr. Borrows as my doctor, I agreed to use VITAS.
The doctors office called their VITAS representative and explained the problems I’m having with their company. A few hours later I received a phone call from someone on a different management team. I explained my issues and the person I spoke with assigned a new social worker to me, and asked if I wanted to also change the nurse. I told her I would keep the nurse a little while longer and see if the issues still happen. I was given the direct number to this team manager and she said to call her when I have a problem and to not let it get bad before I call. I met with the new social worker and I think it’s going to work out. They finally got the proper paperwork completed and my weekly massages started 2 weeks ago. They seem to be helping to relieve some of the numbness, and I’m guessing also helping to reduce my headaches since they became less painful after the 2nd massage.
Today, I called Hospice and told them I want a different nurse. I don’t like that several times the nurse I have had for over a month doesn’t always follow up with me on what she says she will do. She says she will call the next day after talking with a different staff person, then she doesn’t. So, this morning I called and left a message for the manager that said to call her if I have other issues. One of the other team managers called me back. I explained my issues with the nurse and he agreed it should not be happening. He assigned a different nurse to me and said I should be hearing from her in the next day or so. If not, I will call back and tell the team manager. Update: Tuesday, February 11th: My newly assigned Hospice nurse called me this morning and came to visit today. She seems very kind and caring. She’s been a nurse for many years and with Hospice for about 13 years. It turns out she lives a few streets away from me… coincidence??? I don’t think so.
What I want to let you know is that if you or a loved one is receiving services from Hospice or any other type of provider and you are not happy with the service they provide, tell your doctor or whoever recommended them. You can go up the chain of command within that company if you are not getting your needs met or are having issues with them. If going away from home for short trips is an issue for you, be sure to ask questions in advance and if possible get it in writing from someone in authority. I found that what I asked and was told before I signed the paperwork to enroll is not what actually happened in real life. As time goes on, I’m guessing that I will need more care and nurse visits than I do now. I have no idea how my health condition will progress, or the time frame it will happen.
Reminder: Read the story I wrote in October 2013 entitled Seriously, Really, You Would Rather Be An Ostrich. It talks about the importance of having your wishes known and having legal documents prepared. It’s really important!!!
Sending wishes for comfort and love.
xoxo, Maggie