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Barby’s Bucket List update

by BarbyIngle
written by BarbyIngle

Barby’s Bucket List Update… This is ongoing and ever changing as I grow and make accomplishments. I think it is important to have life goals and things that we can look forward to doing. I dont know what order these will happen but I am constantly working on accomplishing them in conjunction with my life purpose to be a Cheerleader of HOPE and a Dancer for LIFE. Follow along with me to see which ones I get to do next…

  1. Dance 6-eight counts with Paula Abdul choreographed by both of us together
  2. Get my own car
  3. Get one my favorite groups (schroeder) to play at a celebration of mine or iPain
  4. Get iPain on the TV show like Apprentice as a charity a celebrity plays for to raise awareness and funds
  5. Go down one of the world’s longest zip lines
  6. Judge at a beauty pageant (possibly be in one for married women)
  7. Meet all three Kardashian girls (and tell them about iPain), especially Khloe’
  8. Take a ride on a fighter jet
  9. Meet Mark Cuban (tell him about iPain, and get his advise to go to the next level with it)
  10. Move to a house closer into phoenix area or in Los Angeles.
  11. Publish 2 more books for a total of 10, by the age of 50 (already have RSD in Me, ReMission Possible, The Pain Code, The Pain Code Journal, Real Love, Wisdom of Ingle, Aunt Barby’s Invisible Endless Owie, and i’m Possible)
  12. Renew my wedding vows in the Caribbean
  13. Ride in a hot air balloon
  14. Run International Pain Foundation with my husband full time
  15. See every circ du soleil show in Las Vegas
  16. Star in a National Commercial
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Why is it important to keep your own copies of your medical records, Part 2

by BarbyIngle
written by BarbyIngle

My records have major mistakes
By Barby Ingle
(excerpt from The Pain Code Book)

Your medical record is comprised of all information generated during your treatment with all healthcare providers. The providers keep track of many aspects of your treatment, including personal, financial, social, and medical information. Many providers are using written forms and notes, but over the past few years, there are great electronic medical record keeping programs that are coming to the market. I am seeing more and more the providers coming in with their laptop and all of my information is in my electronic file. It is important to know what is in your record.

After you order and receive your copies, go through them and check for errors. Check everything because these records are used as a means of communication between your healthcare professionals, hospital staff, physical therapist, etc. They are a legal documentation of the care you have received, a verification of services and many insurance companies request them in chronic care cases to decide on approval of treatment options. The records also serve as basic data for research and education purposes.

It is important to correct mistakes you find on your records. Once a doctor enters the records they are not supposed to change them in many cases. But that doesn’t mean you can do something about the mistakes. When I find mistakes I create a letter and form to the provider to be attached to my medical record. So, if another provider, lawyer (in the case of WC or personal injury) receives a copy, they see the corrections and don’t get thrown off by mistakes that lead to a misdiagnosis, confusion, or delay in proper and timely care.

Sample letter

Dear Dr. XYZ,

Thank you so much for evaluating me on March 15, 2015. It means a lot to me to have you on my medical team. Things are progressing thanks to the hard work you and your office staff have put in to making the treatment you got/are getting a possibility for me.

Update on your condition/treatment since last visit. (example: To date I have done my chest x-ray, echo-cardio gram, blood testing. This week I will be completing my Neuro-Psychological evaluation and insertion of my Portacath. My plan is to then take the appropriate time to heal from the Portacath surgery and then complete XYZ.  I will have my Portacath placed at which hospital on June 30, 2015. My future Portacath monthly care will take place at HHH.)

I have had a chance to look over your medical record notes from my recent examination. I understand that this is your assessment of the examination that took place and it is already written into my file. I would like to take this opportunity to have included in this record the attached response to make sure that we have included all pertinent information.

Please feel free to contact me to discuss this. Otherwise, I will see you in a few weeks at our next appointment.  I am really looking forward to working with you. I thank you so much for all of your help, patience, and support as I complete this process.

Sincerely,
Your name
Your contact info

Corrections to Dr. XYZ records dated 4/15/2015

Page 1

Section – PRESENT ILLNESS INFORMATION

Report States: Chief Complaint:                   Facial, neck, head, abdominal, back, buttocks, leg, hip, foot pain

Patients Correction: Chief Complaint:         Facial, neck, head, abdominal, back, buttocks, chest, both legs, both feet, pelvic pain, both arms, both hands, thoracic pain, full body RSD/CRPS, Graves

Page 2

Section- PAST, FAMILY AND SOCIAL HISTORY

Report States: Med Allergies:                       Keflex: Unknown, unspecified

Patients Correction: Med Allergies:             Med Allergies: Keflex: Diarrhea; dizziness; headache; indigestion; joint pain; stomach pain; tiredness, rash; hives; itching; difficulty breathing; tightness in the chest; confusion; dark urine, Erythromycin, hives, diarrhea, vomiting, Trazadone: fast, irregular heartbeat, feeling faint or lightheaded, hallucinations, mood changes, trembling, headache, nausea, vomiting, unusually weak or tired

Report States: Non-Med Allergies:   Food Allergies or intolerance: None

Contact allergies: none

Contrast agent (dye) allergies: none

Patients Correction: Non-Med Allergies:     Food Allergies or intolerance: None

Contact allergies: none

Contrast agent (dye) allergies: none

Tape Adhesive- skin blistering and rash

Report States: Surgeries and Hosp:   Problems with anesthesia: none

Previous surgery: none

Previous non-surgical hospitalizations: none

Patients Correction: Surgeries and Hosp:     Problems with anesthesia: Nausea

Previous surgery:

7/1999

Jaw Surgery

8/2000

Straighten Deviated Septum

3/2001

Ganglion Nerve Block (series of 2)

4/2003

Epidural Nerve Block (series of 3)

7/2009

Appendectomy

2010

Arthroscopic Meniscus Repair, Right Knee

2/8/2012

Hysterectomy; endometriosis

Previous non-surgical hospitalizations: none

Section – OBJECTIVE

Report States: Construction              (final comment): Patient arrived at XYZ today ambulatory, without the use of any support equipment. Patient was accompanied by: Adult Female

Patients Correction: Construction:   (final comment): Patient arrived at XYZ today ambulatory, with the use of any support equipment (cane). Patient was accompanied by: Her Husband and Adult Female.

Report States: Musculoskeletal:        Right upper extremity: normal inspection/palpation, ROM, muscle strength and tone, and stability.

Left upper extremity: normal inspection/palpation, ROM, muscle strength and tone, and stability.

Right lower extremity: normal inspection/palpation, ROM, muscle strength and tone, and stability.

Left lower extremity: normal inspection/palpation, ROM, muscle strength and tone, and stability.

Patients Correction: Musculoskeletal:          Right upper extremity: abnormal inspection/palpation, ROM, muscle strength and tone, and stability.

Left upper extremity: abnormal inspection/palpation, ROM, muscle strength and tone, and stability.

Right lower extremity: abnormal inspection/palpation, ROM, muscle strength and tone, and stability.

Left lower extremity: abnormal inspection/palpation, ROM, muscle strength and tone, and stability

Page 3

Report States: Skin:                           Normal skin, subcutaneous tissue, scalp, hair, eccrine and apocrine glands.

Patients Correction: Skin:                 Abnormal: skin, eccrine and apocrine glands, Blanching, Rash, Excess sweating and Skin Ulcers present.   Normal: subcutaneous tissue, scalp, hair

Report States: Neurologic:                Gait: Normal

Station: Normal

Patients Correction: Neurologic:      Gait: Abnormal

Station: Abnormal

Section- PLAN

Report States: Comments:                 Patient checked out of XYZ today ambulatory, without the use of any support equipment. All questions were answered and patient verbalized understanding of today’s visit, including treatment and orders. Patient was accompanied by: Adult Female.

Patients Correction: Comments:       Patient checked out of XYZ today ambulatory with the use of any support equipment (cane). All questions were answered and patient verbalized understanding of today’s visit, including treatment and orders. Patient was accompanied by: Her Husband and Adult Female.

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BlogHealth

CureClick Ambassador’s Best Share Practices for Social Media

by BarbyIngle
written by BarbyIngle

BI-Logo-copyCureClick Ambassador’s Best Share Practices for Social Media
By Barby Ingle, Advisory Board Member, CureClick
President, Power of Pain Foundation
March 21, 2015

I have been using social media and blogging since 2009 and realized that there are some posts that go viral or are liked, shared, followed, etc… more than others. When I became a CureClick Ambassador I wanted to be sure to have mindful posts and be able to share on all of my social media accounts. I use Facebook, Twitter, LinkedIn, Pinterest, Instagram, and my personal blog. Below are a few tips I have learned throughout the years of being a chronic pain advocate to raise social awareness, including new tools that I learned once I began posting the CureClick Research Trial information.

First I found, as ambassadors we need our posts to be based on trust, engaging and important to our built in community so that they will want to share it even further. Second, CureClick offers great samples of proper posts for each type of forum. Take advantage of their premade ideas, at the same time, add a personal touch when possible. Each time I post to a social media account, I tailor my posts to the forum I am posting to. For instance, on Twitter, we can only post 140 character posts whereas my blog posts can be much longer. I also work to post a different message each time I post it on social media. For example if I used text from the premade selections, I choose a different idea for the next post. Third, knowing that posts don’t stay in news feeds long I try to be smart on the posting by adding something that will catch the reader’s attention like a picture or video reference. If they miss it in the newsfeed, I want my page to be engaging so that they keep returning for new information. Fourth, use the hashtags provided and an others that you think may engage your members/followers specifically. Fifth, include your specific link for that trial so that you get the credit for clicks and completions. Finally, I reformat the post for the platform being used. For example on Facebook I take out extra space so that the post can be read with the main headline, my personal link, additional trial info, hashtags, and then my connection to CureClick. On Twitter, I include the main title, my link, and important hashtags and attach the pic. I also will make a more generic post when there is not any new trials that includes 5-6 of the trials with just the title and link to read more.

Here are a few general do’s and don’ts when it comes to posting your CureClick Trial Information:CureClick Blog

Do’s:

  1. Ask yourself, “is this something I would like to see?” If it is not something you would want to see in your newsfeed, then avoid posting it.
  2. Being positive promotes engagement and encourages sharing.
  3. Carefully plan your posts and try to think of the value you are adding by posting any and all content. The best content is going to connect at an emotionally, educational, and/or social level.
  4. Chose posts that can be backed up if questioned, and use references when needed.
  5. Post with pictures or video. People are way more likely to respond, like, click a link, etc. when there is a graphic, picture or video in the post.
  6. Share and talking about content published by other support groups, media, bloggers that is informative and/or motivational.
  7. Show support for your cause. Let the passion you have shine by creating content that fits your brand. Aim for 90% informational and 10% (or less) promotions.
  8. When posting informational posts, have 1-2 reference you can refer the person back to. In case someone asks you more info, you can say, refer to x and y for greater understanding.

CureClick Blog 3

Don’t:

  1. Do not use medical articles over 5 years old as a source of scientific information. Unless you have it as a backup source to a newer article/study.
  2. Don’t be negative sourpuss, it may cost you followers. People are quick to unlike a page if posts are negative or controversial.
  3. Don’t ignore supportive/useful comments. Building relationships is one of the most important parts of social media marketing success, so acknowledge comments that are useful/supportive.
  4. Don’t limit the content to promotional updates.
  5. Don’t Post and Run – Follow up on your posts to answer questions or comments for at least two days after posting, so it doesn’t look like you post and run. You wouldn’t ignore someone in true need who reaches out to you in person so don’t ignore them online.
  6. Don’t spam hashtags, it shows you in a disrespectful and distasteful light.
  7. Don’t be too pushy or forward; you want to make a good impression.CureClick Blog 2
  8. Post no more than 5 posts a day with a goal of 8-10 a week, so you are not overwhelming your followers but providing enough content to keep them engaged.
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Why Barby Ingle Became a CureClick Ambassador and Now Serves On the CureClick Advisory Board

by BarbyIngle
written by BarbyIngle

Why Barby Ingle Became a CureClick Ambassador and Now Serves On the CureClick Advisory Board
by Barby Ingle
Advisory Board Member, CureClick
President, Power of Pain Foundation

CC_BADGE_Ambassador_TAGBack in November, 2014 I received a request to become a CureClick Ambassador. What is this all about, I thought to myself? Is it helping pain patients and the chronically ill? After checking it out, I realized that this was a perfect tool to share clinical research trials with the pain community I work with. I also realized that is has far more reach than that, as my friends and followers pass it on to their connections. I personally have family members who have suffered multiple strokes, TBI and Alzheimer’s, COPD, vascular issues, quad-bypass surgeries, diabetes, RSD, etc. With over 130 million Americans living with a chronic illness it affects our entire population, either as a patient, caregiver, or provider. Since my start I have help recruit trail participants for chronic obstructive pulmonary disease (COPD), HR+, her2- breast cancer, memory loss or alzheimer’s disease, people at risk of developing early alzheimer’s disease, rheumatoid arthritis, severe asthma, type-2 diabetes with severe kidney disease and type-2 diabetes. There are more and more trials being updated and posted frequently. Three upcoming trials that I know of are pre-alzheimer’s, non-small cell lung cancer stage IV, and prostate cancer.

 

I love that I can share valuable education about the importance of clinical trials and help teach others about the research process. In the past few months I have been spreading the word about a new trials in addition to sharing statistics and why that trial is so important. I decided to write this blog post about my experiences for the last 5-6 months so that my friends, followers and members of the POPF understand why I got involved and why I am so proud to have been asked to be on the advisory board.

 

The resource area on the CureClick site include overview videos, more info on how rewards work, how I am being compensated, etc. For me personally, I have decided to donate the funds I raise to help the Power of Pain Foundation. My compensation comes in the form of Amazon Gift Cards. I deposit these cards into the POPF Amazon account, and when we need supplies or resources off of Amazon, we are able to purchase them with these funds. It has been working out great. To date I have raised $200 ($150 as an advisory board member, and $50 due to participation of those who have qualified to participate in the trials).

 

As new trials come open I will post information and a link on my social media accounts. My friends and followers will be informed readers when it comes to where to go to read about the trial and how to apply if they feel they are a good fit for the trial. All of the information I provide in my posts has been carefully worded, and then meticulously reviewed by a federally-regulated governing body known as the Institutional Review Board (IRB). This way my readers can know it is legit and accurate. A typical post from me will be with a graphic with information/education about the disease the trial represents, text such as the study title, purpose, study locations, eligibility criteria, and the link to check it out for yourself. I want your participation so that those you love in your life to get help with their illness in a proper and timely manner. The most important part to me is that I am educating all of you about trials and disease specific information on a variety of chronic diseases.

 

Can you become a CureClick Trial Ambassador? You can learn more about CureClick at http://curec.lk/1Gb4toG

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BlogHealth

Game Plan; Empowerment Plus

by BarbyIngle
written by BarbyIngle

“You have a better game plan than the {others} – and that is the name of the game – to constantly dream of better ways and a better future for those we care about and for our society. We all need to work towards better models of care and better care. I call your game plan “Empowerment Plus”, for it focuses in on empowering the person in pain. The {others} is old wine in new bottles- it is medical corporatism – with a kinder and gentler “bio-psycho-social” face. It isn’t energetic enough or focused enough on people to meet the needs of the pain community. As pain remains very much a mystery, and the prevalence of pain conditions like neuropathic pain and osteoarthritis are on the rise, we all need to strive to overcome the limitations of past ways of thinking about and addressing  the needs of people in pain. I know you are a game changer in the pain community and that is what is needed to advance pain care beyond its current great limitations. Until next time, David B.” 2/16/2015

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BlogFun

AFTER THIS WHAT COMES NEXT?

by BarbyIngle
written by BarbyIngle

I wrote this in 2004 after undergoing multiple life threatening surgeries/complications, searching for a diagnosis and proper healthcare after being struck down with what I now know is reflex sympathetic dystrophy. My first marriage collapsed, I was losing everything materialistic. I was on food stamps, and I was lost physically, mentally and spiritually. I sent this to my family members after my inner voice reminded me of why I am here and that my purpose was to be a cheerleader of hope.  In January 2015, my gramma passed away and I went to her house. The first thing my sister picked up when she walked in was a notebook.  This email was printed out and right on top. I know that this meant a lot to my family when I wrote this and to my Gramma.

AFTER THIS WHAT COMES NEXT? MARCH 12, 2004

As a child, you think whatever situation you are in will last forever. If you are having a good day this is great. When you have a bad day it is as if the world will end. You have no hope, no way out and all of the options seem unreachable.

One way to tell you have grown up and become an adult; is when situations become temporary, solutions become options, there is clarity in thinking and nothing is unreachable.

Ove the past 30 plus years of my life there has been greatness, pain, sorrow, suffering, joy and exhilaration. Until recently, as I was a child for far too long, there was no important reason for life. Life just was. The lows have brought me lower and the highs did not seem like much of an accomplishment. I have heard that the person you are shows best in the face of adversity, actually the person you are shows all of the time.

When things are hard for you it is temporary. The best thing for me is to look at all of my options. Dream big but also bold. You might find an answer this way. See, the best solution may be something you do not think you want. You might struggle through the situation making life harder on yourself. Embrace life and use your inner voice as a guide. Remember in these hardest times you are growing and changing. Change takes time so your lows may seem longer than reality and the best thing to do is let go of your stress, anxiety and discomfort. Give it to God. He has you going to a predestined outcome even if it is not what you wanted. There is a plan and purposed for all of us. God sets this for us before we are conceived. How we accept it and embrace it will depend on your freedom of choices.

God gave us freedom to follow the plan he set the way we want. The outcome will be the same – because there is a plan. This plan is known by your spirit. Listen to that voice inside. Freedom gives you the choice to take the path you want. One maybe longer and the other harder but the outcome is the same. The long path will be the easy one. The short will be the tough but it ends quicker. Embrace life and be comfortable with your choices. Look and listen past your ego’s reaction and embrace each situation whether you feel it is positive or negative, it is happening for a reason.

When things are great for you, what do you do with the joy? Do you keep it for yourself? Do you share it with those you know? What about those you don’t know? I have found that when you share your gifts with others you get tenfold in return. It is not about money I am speaking. Although money does help as a temporary fix. What I am getting at is when things are good for you and you observe in someone that they need attention let them know that you know. Tell a stranger things are okay. Tomorrow will come and it will be a better day. That you do care and that God has blessed them. Let them know you will have them in your prayers and then follow through. Really say a prayer for their well-being.

Life is about embracing God’s plan, helping others, following to your best abilities the code of the Bible, and knowing you have greatness in you! Growing up is hard to do. There are different levels and turns in everyone’s lives. As you reach adulthood you may fight it as I did. It can be a bumpy transition. It brings with it a peach. Clarity acceptance of self and focus. These gifts will help you guide others to this special point in life. Remember to be the person who honors your gifts, shares them and embraces them – even through the anxiety of life.

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HAVE SEVERE ASTHMA? PARTICIPATE IN A CLINICAL STUDY THAT MAY HELP

by BarbyIngle
written by BarbyIngle

Hi everyone! There is a clinical trial going on right now that assesses the safety and effectiveness of the investigational drug when administered in severe asthma patients whose symptoms are otherwise uncontrolled with current standard therapy. Despite standard treatment, up to 50% of asthma patients have symptoms that are not well controlled, with a negative impact on quality of life.

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Looking for BREAST CANCER CLINICAL TRIAL PARTICIPANTS

by BarbyIngle
written by BarbyIngle

Breast cancer is the most common cancer among American women, where 1 in 8 women in the US will develop breast cancer during their lifetime. The majority of breast cancers are hormone-receptor positive (HR+), which means the cancer cells grow in response to hormones. Such cancers are typically treated with hormonal therapy.

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BlogHealth

Power of Peanut Butter

by BarbyIngle
written by BarbyIngle

Don’t underestimate the power of peanut butter – This protein source is full of nutrients and can greatly increase your energy levels. Whether you put some on apples for an incredible snack or add some to your smoothie, peanut butter is an amazing source of protein that is easy to begin eating now.

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BlogHealth

1-pager Provider summary

by BarbyIngle
written by BarbyIngle

Be prepared when you go to the provider: Use this ‘1-pager’ sample to come up with a brief history for your provider, reminder of medications needed, questions you thought of since your last visit, etc.

Sample One Pager

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