Rosies Dream

Where In The World Is Rosie?

8/17/2014

I have a few very busy months coming up. I have been invited to be the keynote speaker at two of Wisconsin Hospital Association's Fall Conferences in September and I am co-chairing the 26th Annual IHI Forum in December. I am also doing a workshop at the Forum entitled "Patient Driven Policies".

I am excited about these opportunities because it will help reach many in the medical field. Many times they know about the numbers and the percentages but have not heard stories that are connected to those numbers. So many times when I attend meetings with the medical field personnel, I find they know their numbers but they do not know how patients have been harmed or how they have been harmed in their hospital or clinic.

It is not always easy to be the voice of the patient. For many patients the pain and anger makes it to hard for them to share their story. It takes a lot of courage some days to tell your story especially when there is a room full of medical staff. Many times they do not want to hear about the issues.

If you have a story I could use as a case study example in my workshop, e-mail me at bartel1949@gmail.com or call me at 920-517-7278 for more information.

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Loss is Hard to Accept

7/15/2014

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As I enjoy the summer months, I realize all the things I have lost due to MRSA. This weekend my family spent an evening enjoying fireworks and the following day a parade. Several things lead to my not participating. First, wheelchairs and grassy parks do not work and second, because of antibiotics, sunshine does not work. So I spent my time watching the hallmark channel's Christmas in July movies and having a good cry. A good cry is great for what is bothering you and clears the mind and heart.

This time alone lead me to think about the changes this infection has made in my life. I was a very social person, who was the party planner. I would be open to any event. Now I always have to check if events are wheelchair accessible. Then I have to know where the nearest wheelchair accessible bathroom is located. By this time the fun is just about taken out of the event. If I go, the amount of participation is limited to how much I can do from the wheelchair. Think about meeting friends for a drink at a bar. The view from a wheelchair at a bar is quite blank. Sure cannot meet people across the bar.

Everyday I do figure out new ways to participate in social events but I also know my life will never be the same. Some friends never call anymore. I call them but they seem to be busy with other friends. They moved on while I have been dealing with the infection or the things we did in the past are not things I am able to do today.

The saddest thing that happened was that I was having my knee replaced because I wanted to be able to go on long walks without pain. I know our plan is not always God's plan but He has really given me a interesting new plan. I am not unhappy with my new life but it is sure different. My goals are very different.

If anyone else feels lose due to a health issue, I would love to hear about it and how you are coping with the changes in your life.

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Why Rosie's Dream?

5/27/2014

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Why I decided to create this website has to do with the fact that many times I was frustrated with MRSA. It was hard to find a place where I could talk about what was happening to me. People have very little information about MRSA.

I have been having lots of problems with my infection the last several weeks. Many people think that once you have been treated for an infection, the infection is gone. This is not true with MRSA. Anytime I get a little run down or stressed over something, I have a flare up of the MRSA infection. In my case that means more IV antibiotics. This is why I feel so strongly about finding away to stop the spread of the infection.

My husband and I had planned to go away for a few days this week. Again MRSA put a stop to our plans. Now I can administer my own IVs, so this should not be a problem. Well, guess again. Because I turned 65 in March, I now must go to an out patient facility for my IV meds. For me that means driving 58 miles round trip to get a medication I have been administrating myself for five years. Also, the total drug cost has gone up because now we are paying someone at a costly out patient facility to do something I am very able to do for myself. This is not even considering the fact that I am now exposed to more germs in a facility which treats all kinds of things. Everyone should know you are safer and less likely to get something else in you own home. Again, the patient's input is ignored. My ability and willingness to administer my own medication is completely ignored. Because of this "rule", my whole life is turned upside down. I strongly believe it will take me longer to recover from this bout of MRSA because I am not in control of my treatment. As patient advocates, we need to use our voices to change these type of situations. Our treatment should never be determined by your age. Every patient should be treated as an individual. How cost effect is my treatment this week? It is costly both financially and emotionally. It is hard to be treated like your abilities do not count. The only thing that mattered this week is the Medicare rules. Rosie's Dream was not happening because the world of MRSA just got harder to live in.

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Where In The World Is Rosie?

Loss is Hard to Accept

Why Rosie's Dream?

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