THE WRITE PLACE…

to find Patti Singleton these days.

Tag Archives: patient advocate


by 16 Comments

Souvenirs from My Heart; Postcards-5

Look at all these beauties! I think we saw a total of 5 bulls and one doe. Phall Photos 2013

Look at all these beauties! I think we saw a total of 5 bulls and one doe.
Phall Photos 2013

Did I really take another day off? No, but me and my friend drove the country back roads, the loooonnnnggg way to my destination, and I got some great shots in. Fantastic Elk pics and more.

Other notes:

Please see the Book Review on this main page (it’s in the right hand column on my screen–who knows where the hell it is on yours?).  I can’t recommend it enough.  You can buy it at Amazon.

I’ve dedicated my new photo site to my sister who died in 2012. I’ve added a page for my mother’s garden photos. She’s very good and grows an awesome garden every year in Eagle River, Alaska. Go on over and meet my mom, Rae Hall; you’ll like her! Phall Photo site here.

My son is sore but okay. Thanks for all of your well wishes to him.

Here is the 4th installment of the serialized version of a section of the memoir, Souvenirs from My heart; The Patient Patient Advocate.

cont. medical history document…

March 2006 Paul had a routine colonoscopy. The doctor that performed it said that Paul had 1 benign polyp that was removed, and suggested a follow up in 5 years. Paul’s PCP (his doctor) sent a letter saying that the “tubular adenoma” polyp was “pre-cancerous” and he wanted him re-checked in 18 months. Paul recovered quickly from the procedure, but was psychologically bruised :>) by the preparation for the procedure the night before. Being a former Marine, he had a few choice words to growl during that memorable evening. I still got him to laugh with my gross jokes about his “situation.” We were frustrated to get 2 different results and recommendations; one was a relief, while the other made us concerned.

Meanwhile, Paul was having issues with extremely sore hands and cramping–especially at night–in his upper arms. He never had aches and pains before, and we wondered if somehow the surgeries had something to do with it. Paul saw his PCP, who sent him to the surgeon that repaired his rotator cuffs …the surgeon had never heard of these kinds of side effects, and sent Paul for an arthritis test.

June 2006 Three months later, a diagnosis; arthritis in both hands, severe in thumb, but why the sudden onset? And this diagnosis still doesn’t address the soreness in his upper arms. Paul has always been very active and healthy, yet since around the time of his shoulder surgeries, he had been plagued with cramping arms, aching hands, night fevers & chills, fatigue, dental issues, and heartburn…he ate a lot of Tums.  Paul saw his PCP regularly (the months of 4, 6, 7, 8, 9, 12 in 2006), but no diagnosis was made. His shoulders gave him no problems at all.

For the next 8 months, Paul had the same issues, but the crystal form of  MSM that I filled capsules with seemed to help the aches and pains.

Postcard 5:

Paul and I both had gut feelings about all these strange medical happenings. Follow your gut feelings. We did do the normal things that you do with medical concerns, but we didn’t go any further. Push harder; get a second opinion if you don’t get satisfactory answers. It is your health and life on the line, so don’t worry about hurting your doctor’s feelings.

Postcard 1 here.

Postcard 2 here.

Postcards 3 & 4 here.

Thanks you wonderful people!

Patti


by 16 Comments

Souvenirs from My Heart; Postcards-Three and Four

Caspian Tern at Dinner Table. John's River, WA PHALL PHOTO 2013

Caspian Tern at Dinner Table.
Johns River Dike Trail, outside of Aberdeen,WA
PHALL PHOTO 2013, click to enlarge

New Header photo. I love the sun rays that shoot down from the top. I took this through the Sweet Gum tree. Yes, that was a sweet gum seed pod/fruit in the post here. None of us ever figured out why it was so elongated. But after returning to investigate, I saw some were round, some were like the one in my photo.  Jon discovered that there are two completely different shaped leaves (pic below) on same tree?

Sweet Gum Tree leaves. The white feet of a cave dweller:>) PHALL PHOTO 2013

Sweet Gum Tree leaves. The white feet of a cave dweller. Painted nails & cool sandals courtesy of my daughter:>)
PHALL PHOTO 2013

This post  is part 3 of a serialized version from a portion of my memoir-in-progress. It varies slightly from the actual book, in that it is not a book, but a blog post! Smile. Below info is from the document I gave medical staff; theirs had a few more details (exact dates, etc), and no memoir narrative. The document also included Paul’s D.O.B. and his familial medical info, such as parent’s cause of death.

Abridged Medical History

August 2005 Surgery to repair left rotator cuff, non-hospital outpatient. (On the love story side of things, although I had met Paul 10+ years earlier, I became reacquainted with him a few weeks after this surgery. More of this in the first book in the memoir series)  

September 2005 Labs show low hemoglobin. Already, Paul has me tag along to all his appointments; an advocate is born (and no, I never got a cape or badge or anything).

October 2005 Paul went to the dentist for pain associated with impacted molar under a crown and gum problems. Molar removed, recovered quickly. Not to freak you out or anything, but leukemia patients often (Remember, I’m a stickler for no statistics) have dental issues months or even, as in Paul’s case, years before diagnosis.

Postcard 3:

Do you have a hard copy list of the current names and numbers of your friends and family? Why not just go ahead and start a file for your answers to these postcards? Then, if a crisis happens, you’ll be that much closer to being prepared. Add a star by those you want contacted first. Tell your closest family member where the file is kept.  

November 2005 Labs show iron/folates a little low.  

December 2005 Surgery to repair right rotator cuff, non-hospital outpatient. Paul recovered very quickly from both surgeries and followed through with several months of physical therapy. (Love story notes: I had just sold my house, so it seemed like a perfect time to move in with Paul and help with his recovery. Smile. His personal caregiver is born. Again, no cape, but I do get to be his chauffeur in a brand-spanking new Thunderbird!) Smile.

Late winter/early spring 2005/2006 Paul had periods of 1-2 weeks where he had a fever (no recorded temp, but skin was extremely hot to touch), and wracking chills at night. I would wrap my body around him trying to warm him up and calm the chills. He was fatigued and pale during the day, but continued to work, with more rests in between, and at a slower pace. We self-treated with aspirin and anti-inflammatory OTC drugs, rest, and cool rags for the fever. Something was going on, but his doctor had no idea what. These are more statistic-free indications of leukemia.

Postcard 4:

Have you followed through on Postcard 3 yet? Please add a page of basic family (parents, grandparents, and sibs) medical info. Big time-saver: your doctor’s office has this (part of your initial medical questionnaire)  on file. If stopping by doesn’t work, call and have them send you a medical release form. Fill it out, mail it back, and they will mail what you ask for. Some folks with huge files, can often request, and get a medical file summary.

Postcard 1 here.

Postcard 2 here.  

Hope you find something useful in these posts. Please let me know with a comment?

Thank you,

Patti


by 23 Comments

Souvenirs from My Heart; Postcards-One

CASPIAN TERNS & A LOST SEAGULL Ready-Set-Take Off!!

CASPIAN TERNS & A LOST SEAGULL
Ready-Set-Take Off!!

First, please go see my “gutsy story” at http://www.gutsyliving.com  You can make a comment at the very bottom of the page.

The post title conveys that this is part 1 of a serialized version from a portion of my memoir-in-progress. It varies slightly from the actual book, in that it is not a book, but a blog post. Smile. My intention is to keep my writing focused on the memoir project, including blog posts here on The Write Place. If I bore the socks off you, then my new intention will be to move to a deserted island and never write again. Either that, or rewrite the damn thing, I mean, the host object of all my worldly dreams.  So, on with it!

This post could be about you or someone you love.

The contents of this post don’t come with citations, statistics, links, or expert opinions. You get souvenir postcards, instead.

The words within come from my heart; these are not happy souvenirs from my heart, but practical souvenirs, with bits of humor to buffer the fear, pain and sadness. (Plus Paul and I really loved to laugh)

These souvenirs were collected along our travels through many hospital stays. My late husband, Paul, and I gathered ways to help others who would be fighting for their lives, like we were fighting for his at the time.

We wiled away many hours in the hospital and temporary housing, talking about the physical clues we may have missed. I made a few notes about what we could put in a book for people in our situation. Paul’s first suggestion about our future book was to include his health information, from a few years before, right up to the day he was diagnosed with cancer.

That part was easy; I had already dug through doctor bills, lab reports and even our family wall calendar. My mission had been to make a document, specific to Paul’s health, for the millions of times doctors, nurses, administrators and others asked about Paul’s medical history.

I’m giving you the nitty-gritty truth here; even if you hand them a copy of the medical history, they will still want to hear it from the patient. In our case, Paul had made me his unofficial health advocate right after we became a couple, so he would defer their questions to me. I just read the answers from our copy of the document, or used it as a reminder of dates, lab values and other details. It did take months for me to think of making the document, but it sure saved our brain power once I had it completed.

Postcard 1: Make a written health history for yourself and family members, BEFORE it is needed, like now. Okay, maybe wait until you finish reading this post.

To be continued…

See, I told you it would be short, but that also means I had to cut it off sometime.

Watch for Souvenirs from My Heart; Postcards-Two with another beautiful picture that has nothing to do with the post.

As usual, I am happy to read your comments, questions, and critiques. However, mind reading isn’t my forte, so you’ll have to actually click on the button and write me a note. I’m so happy if you “like” this post, but why do you like it?

If you can’t “comment” or “like” because of technical difficulties, send me an email at 1writeplacewordpress at symbol gmail dot com. Weird, but that is so spammies can’t glom onto me. Please use the blog post title in the subject line.

Thanks ever so much,

Patti