Daily Journal – May 12

The last couple of weeks resembles the “Great Science Experiment!”  I originally visited my doctor for a nerve on the right side of my face being sensitive to touch and radiating pain with even the slightest pressure. We had already decided on previous visits that 2017 would be the year to see an orthopedic doctor about the erosive arthritis in my right hand and to see if I could find relief through pain management for my SI injury. This has resulted in me feeling quite overwhelmed. It seems that there is either physical therapy or a doctor appointment every day. Take my advice and do not take a “grocery list” to the doctor! It is not conducive to an introvert personality to have so many appointments in a short time. As you read on, you’ll see how my story reflects my INTJ personality.

For anyone wondering (lol) the MRI did show that I have a brain – and, it’s quite normal! Imagine that! The MRI showed no abnormalities but also no reason for the nerve pain. The nerves are too tiny to be seen on the test. My doctor said it could be something as simple as a kinked nerve and it will straighten itself out – hopefully soon. It’s way past wearing on every other last nerve. Most facial movements cause it to either hurt or send a strange sensation down my face. The nerve originates at the brain and travels through the skull and separates into three nerves, each servicing a third of the face – top, middle, and bottom. It is the upper third that is giving me problems. So, it’s a wait-and-see type of thing. Wait and see doesn’t work well with my personality so it’s a little (lot) trying. I am not the most patient of people.

The back/spine doctor that I had an appointment was nice enough but wanted to give me an injection in SI for the pain. He was explaining how they use an x-ray to insert a tiny needle to inject the medicine into the SI. I will tell you right now that I DO NOT have a poker face. You can read my face as though it had words written across it. He stopped mid-sentence and commented, “that doesn’t appear to be an option?” Dude! You think? Nope, nope, and nope!

For those of you who do not know where the SI is located, I will explain (short explanation). If you look at a skeleton, it is between the hip bones. It separates to allow for the birth of a child. Knowing this information, can you imagine the look that must have crossed my face? My imagination was running wild! You want me to bare my ass (excuse my language) and you want to stick a needle into my SI? Uh…nope, nope, and nope! Now, I have no idea exactly how they do this, but my brain was telling me there was no way that was going to happen! Doc, come down off the ledge and let’s start at the bottom of the ladder!

He was kind when he mentioned that is what they do there (at the hospital). Imagine if you don’t think out the scenarios and just agree to what the doctor tells you. I ask questions and then more questions, and then follow-up with more questions (the personality thing.) He was also kind enough to tell me that it doesn’t always work and some people need a shot every couple of months. What was going through my mind was, you want to stick a needle in me and then it might not even work? Nope, nope, and nope!

I am not one to mask pain. I want to know and understand what is causing it and what can we do about it – sans the needle. I told him that I didn’t know if I should quit walking, go to a gym and work with a trainer, or do physical therapy. His answer was physical therapy and that is where I am with the back problem. I was in physical therapy last summer for four months with a concentration on dry needling, but with no exercising. I decided to try a different place and so far, I am very pleased with the results.

This time, during the evaluation, I let the PT know about my experience last year and what I was looking for – which is pain management and hopefully some healing through exercise and stretching. He listened very intently and answered all of my questions and during our sessions, explains what he is doing and how it affects the SI joint. The last PT I used didn’t like when I asked questions and really didn’t like that I did research when I went home. This PT has been very open and receptive, even giving me things to look up for information. I am finding relief through the exercises and manipulation of the muscle (that did not heal properly from my fall.) He also explained that dry needling is good, but only if followed up with stretching and manipulation once the muscle is relaxed. Information fell into place for me. I have to admit though, the 15 minutes of heat at the end of each session is my favorite!

I know this post is getting rather long, but here’s the story about my appointment with the orthopedic surgeon. You know it’s not good when the doctor looks at you like his last meal! First, I saw the nurse for the usual and when she saw my allergy to iodine, she remarked that might be a problem because the doctor used iodine at the injection site.  “?” It took a moment for my answer, “That won’t be a problem” to register. Geez! Why does everything involve a needle?!

First, he wanted to cut open my fingers and scrape what he referred to as bone spurs on my joints by the fingernails (if it has a name, I don’t know it), then fuse the joints. One-at-a-time. This would involve six surgeries! THEN, there would be a joint replacement of my index finger/thumb on my right hand (the one affected by erosive arthritis). I was in pain just listening to him. Once again, it’s like – come down off the ledge doc. When I burst his bubble, the next suggestion was a shot. Again – masking the pain. Nope, nope, and nope! We settled on physical therapy, which I will not begin until I work on my SI. Too many appointments!

The bottom line of that story is I may eventually have to consider these solutions, but not until I’ve discussed with my oncologist how surgery might affect my blood disorders. Any type of blood loss will affect my red cell count and platelet multiplication in a negative way.

This all happened after I made it to the hospital for the appointment only to have GPS route me out of the parking lot, a half mile down the road, u-turn, back to the parking lot I had just been in, and then tell me I had reached my destination. Say what?!

That concludes my “Lucy” adventures for the last two weeks. Thanks for stopping by!

Beyond Embarrassment by JoAnne Lake and Biosleuth Julia Parker

Neurogenic Bladder and Bowel are conditions in which a person lacks bladder and bowel control due to a brain, spinal cord, or nerve condition. Millions of Americans live with this debilitating health issue. In 2009 JoAnne Lake was diagnosed with Neurogenic Bladder,

finally discovering the cause of years of discomfort and embarrassment. Writing became her therapy and a way to connect with others who shared her diagnosis. Through her blog, Trudytriumph.com, she met online others who shared her frustrations and challenges. JoAnne Lake shares her story in Beyond Embarrassment. Along the way she educates, empathizes, and encourages women who struggle with the same health issues. Written with a girlfriend-to-girlfriend feel, she provides practical Tip Time for dealing with the challenges of bladder problems as well as suggestions for living every day to its fullest. With professional input from Biosleuth medical research librarian Julia Parker, Beyond Embarrassment offers readers strategies for meeting their medical challenges and ideas for working with their medical teams, family, friends, work situations, and travel. Readers will discover ideas for getting on with living and not being held back by fear or anxiety about their conditions.

Purchase on Amazon – http://amzn.to/1oVDBEg

Author JoAnne Lake, a farm girl from Prunedale California, is an insistent patient (forthright and wordy) because she is one of five million people in America with bladder problems and wants to start a conversation. She likes to tell it like it is. The secret of her success is embracing the state of affairs with luminosity and honesty by taking the punch away.
She does not want to be remembered in connection to the toilet, yet she sees toileting dysfunction as the last frontier of subjects that needs to have a mature conversation. Her writings come from life experiences and emotions as a patient, mother, educator, and friend. After journaling her private thoughts and feelings, she started writing a highly successful blog in 2012 to educate and inspire others with bladder and bowel problems. This is her first book.

Visit JoAnne Lake (as Trudy Triumph) at her website www.TrudyTriumph.com

Biosleuth Julia Parker is a researcher of patent, scientific, medical, and company information by education and training. She holds a BS in Microbiology from Purdue University, an MS in Pathobiology (School of Public Health & Community Medicine) from the University of Washington, and an MLIS from the University of Washington.
Julia has worked in the nonprofit and biopharmaceutical R&D sectors, as well as in clinical, academic, and public library settings, as a research/reference librarian. She established Biosleuth Consulting Services LLC in 2009 in Washington state, where she resides with her husband, grown daughter and two cats.

My Review –

JoAnne Lake and Julia Parker did an amazing job writing a book about neurogenic bladder and bowel conditions. The book not only contains much-needed medical information on the conditions, but it is written in a very human and down to earth format.

Beyond Embarrassment contains stories from JoAnne Lake’s life and how she has coped with the condition and still managed to live life to the fullest. There are little “Tip Time”, “Chuckle Time”, and “Knowledge Nugget” boxes scattered throughout the book with extra tidbits of information as well jokes to make you smile.

JoAnne describes her journey from before diagnosis, through diagnosis, and up to today. Through her stories, she educates us on how to choose doctors, and even when it’s time to change doctors. We must always remember, first and foremost, that we are our own best advocate in most instances. She reinforces this in the book.

There are chapters on symptoms, doctor visits, intimacy, and devices and how to use them. JoAnne teaches us that even with a difficult condition, we can keep a positive attitude and learn to live life to the fullest. In the book, you will find sections with letters from readers, and questions to ponder, as well as a section on parenting a child with these conditions.

The book is a complete guide on living with Neurogenic Bladder and Bowel conditions. If you suffer from either condition or know someone who does, this book is a definite must read. It is easy to understand and provides a wealth of necessary information. I am giving Beyond Embarrassment five stars. JoAnne Lake is definitely an inspiration to us all.

Purchase on Amazon – http://amzn.to/1oVDBEg

My Life. One Story at a Time. is an Amazon advertising affiliate; a small fee may be earned when purchases are made at Amazon through the link above. A free book may have been provided by the source in exchange for an honest review. Views expressed by authors are their own and do not necessarily reflect the views of My Life. One Story at a Time. My opinions are my own. This provided in accordance with the FTC 16 CFR, Part 55. 

iPhone – have you locked out your emergency contact?

I am a person who always seem to be one step ahead; as in never in the current moment! I see the big picture. I think ahead. I am normally prepared for most things that may never happen. So it should come as no surprise to anyone that knows me, I have an app that created a lock screen photo that contains my emergency information because goodness knows I have nightmares about someone making decisions for me that should not be. That is why I am sharing an app that I just downloaded to my iPhone; an app that will allow emergency personnel to contact your designated emergency person even with your phone locked – and my phone is always locked.

Even before I came across this app, I had as my screen saver a picture of me (“Hey, look! That lady forgot her phone!) and a notation that if my phone was found (if lost) to call a certain number (my hubby’s phone). That information alone would help to identify me and give a contact name and number in case of an emergency.

Provided you know how to access the Medical ID on a locked iPhone, you can also access pertinent information via swiping the locked screen. Having the information on the screen is a sure thing. You know – so someone you do not want making decisions for you doesn’t.

This new app, “ICE” (In Case of Emergency) is a great app. If I remember correctly, the cost was $1.99.  It was easy to set up – I did it in a matter of minutes (it took me that long because I kept pressing the wrong buttons). It has my hubby’s name and phone number to contact in case of emergency. It also has my photo and my medical information that I considered to be important – my blood disorders, blood type, and allergies. It is all saved very prettily on my locked screen. No worries that my phone contacts (and how would a police officer know who to call if he doesn’t know who I am) cannot be accessed.

ice app

There are a number of other apps on the market (for all phones), some for free, but this is the one that appealed to me. It is the complete package and well worth the $1.99.

You can also achieve this effect by using a photo of your own choosing and an app that allows you to put a message on the photo. Just be careful that the information is not obscured by the date and time and it contains the information you deem important.

I would love to hear your input on this topic. Do you use an iPhone (or other) and have you taken any steps to help emergency personnel to identify you, and to be able to contact your emergency person?

One last bit of information – you can add more than one contact person to the screen.

Just leave your comments and thoughts in the comment section! Thanks!