Do You Advocate for Yourself and Do Research or Get a Social Worker?

A classmate from high school, Linda made contact with me through a site called Classmates.  So it has been well over 40 years since we have seen each other. She has had contact with two others who were important to me also and we will try to get together for lunch in the near future. She asked me if I had to be my own advocate or do my own research on my own health care. The answer is yes. When I was very weak and felt so bad, this was a role that was almost impossible to play.

I thought we needed people we could contact that could help us during this time.  I had a problem having very bad hot flashes and I could no longer have hormones because it was a fuel that fed my cancer.  So I mentioned to my doctor then that I heard reports that certain antidepressants helped to control hot flashes. My doctor then said that if I could find an article published in a well known medical journal supporting this, he would agree to this. While searching on the Internet, I found an Ask-A-Nurse site and that nurse was able to give me a citation my doctor accepted.  I thought my doctor should have known this information.  I don't think I could have been the first woman going through this.  I  also ran into financial problems with my insurance and the hospital I went to had used a wrong code which caused my insurance to deny payment. The clerk in the billing department dealing with my bill was too casual in my mind. I ended up writing letters questioning how this was handled and the problem of expecting patients to take on this role. 

My point is when I feel fine,  I have no problem doing my own advocacy or research and since I have a vested interest in the information, I often times would do a much better job on this rather than someone else. But, when I do not feel well, this is more than I can handle. I do have a retired social worker friend, Linda, who in the last eight years has been a wonderful advocate for me.  She at times found this very frustrating, but did not give up. I appreciated her ability to not give up performing like a dog with a bone.  I feel social workers can be the best people to do this if they do medical social work.  Being your own social worker does not always work well.  You can be too close to the problem and emotions can get in the way. 

.....................

My granddaughter Crystal texted me this week asking how I was saying she missed me.  I  asked if she would have lunch with me.  She agreed.  I had to run errands including picking up my glasses which were finally the correct prescription. We went to eat at Johnny Garlics which has a $10 lunch menu. Crystal is about two months pregnant and going through morning sickness, so it takes a while for her to get over her nausea. She has insurance through her father but they said since she was a dependent,  they do not cover OB/GYN. So odd!  I didn't think they could do that. I did know she needed to apply for Medi-Cal (like Medicaid in other states) for her baby was born. Her boyfriend is in the picture, but works part-time and goes to college and has no insurance.  

My Granddaughter Crystal at Johnny Garlics

I had dinner at a friend's home. Linda (I have several friends named Linda). She is a social worker. There were ten of us, several were social workers and two were attorneys. What a great group!  Linda and her husband Thomas made a fabulous Puerto Rican meal and we even played a type of guessing game called Taboo. So I brought up what my granddaughter is having to deal with in regard to her health insurance.  They stated it was illegal what the insurance company was doing. They suggested we call and speak to a supervisor and follow up with this by letter with a copy sent to the Insurance Commissioner of California.  So that will be the next step Crystal and I will take.  So helpful.

At this dinner, I met a couple, Jim and Kathleen Faulkner, both attorneys.  I really liked them. Kathleen and I really connected. She is active in a group called Writers of Kern. She writes poetry. She was urging me to write. I told her I did through my blog. She also urged me to join Writers of Kern.  I have been to this group once about a year ago. It was a good group.  I would like to do this. I worry about over-committing and not being able to keep this up.

So my class with Carol Bradshaw went well. I had some problems with the iris I drew. She gave some suggestions on correcting it.  I did work on it. She also showed how we would go about painting it  the variation in color in the flower is a wash.

My Iris in Pencil - Edited

My Iris in Watercolor

While I was at class, my friend Martha sent me a message she would see me at 5 pm. I had completely forgotten!  I panicked because I had a medical test the next day, but it was late enough not to be an issue.  I had several tasks to accomplish before going, but I did well and got to Martha's home at the regular time to go to the Helping One Woman's dinner. Good event and the woman, Anna Hernandez-Treviso, has a son with AML Leukemia who recently had a bone marrow transplant.  Though he is not out of the woods yet, it looks hopeful.   They had a silent auction and I bid on and got flower pots and a stand. They'll look good in my yard.  Had another wonderful breakfast at Susan's home the next morning before heading home. 

No word yet on the retaining wall in my back yard. Evidently, it is complicated; It was not meant to be a retaining wall. In the 1970's, the city (?) back filled the dirt against this wall when an area above us was put in after this neighborhood was done.  I'm so worried that the cost will be prohibitive.  He states he can tell me next week. He is waiting on the estimates by other people involved in this project. 

My friend Janet and I met twice this week once after another MUGA scan ( to check my heart) in preparation to seeing my oncologist next week. The other time was with Lisa and Charmaine at Sandrini's.  It is always good catching up, but I headed home to lie down and promptly fell asleep.  I think if I keep my meals down to salad and skip the drink, unless it is evening, I may be able to stay awake more.  

This is a lovely poem that describes life moving on:

Nothing that is can pause or stay;

The moon will wax, the moon will wane,

The mist and cloud will turn to rain,

The rain to mist and cloud again,

Tomorrow be today. 

 

~ Henry Wadsworth Longfellow 

It's kindness which matters. This is a touching video. We all have our stories. 

Empathy- The Human Connection......

Here is a lovely picture of Meagan, my granddaughter-in-law with both of her sons, my great-grandsons, Kason and Conner (just a year apart!).

Meagan with Kason and Conner

So this next week I will go in for another injection in my back. This ends up being a forced bed time because of the medications given during the procedure wipe me out.   We are also going to have my grandson Kevin's birthday here to put up a blow up slide with water running down it. I won't water before to use that time for watering the yard through this slide. I'll also situate myself or another adult on the wall side to keep the boys away from it. 

So as usual these days, another full week.  No regrets and very eventful. I hope your week went well and I should have a lot to share next week.   See you next Sunday.                 Rachel.