Wisdo

Welcome to this Wisdo Chat with me – Barby Ingle. I am a Chronic Patient going on 20 years of living with pain; Endometriosis, Central Pain Syndrome, Hypothyroid, Asthma. TMJD, Dystonia, and more. Most of these are rare diseases as well. I think of myself as a cheerleader of HOPE and I do hope that I can offer all of you some tips, tools, ideas, and resources tonight. Please feel free to jump in with comments, questions and support!

This month is Chronic Pain Awareness month worldwide, so I am putting the focus on how YOU ARE THE I IN PAIN. Meaning, you are the best advocate for you. Becoming an empowered patient living with any chronic illness is important, but especially pain because it is subjective in nature and getting others to understand the invisibleness of it can be difficult.

We can either let the pain disease control us, or learn to understand the healthcare system and take control of the disease. Coping with a chronic pain condition takes hope and self-awareness. I am going to cover some goals, tips, and tricks to navigating a chronic pain disease from the patient perspective.

September is Chronic Pain Awareness Month, the perfect time to learn, grow, research and take control of your care!

I want to talk about me, want to talk about #1, oh my that’s “I”. We can be our own worst critics, especially when we are having a flare, depressed from what we have lost, or are not able to get the care we need. There are some things we can do to take care of “I”. As a pain patient the 1 person you must take care of first is yourself. Doing so does NOT make you selfish! It makes you better able to take care of others as you learn to manage yourself and the pain that is part of your life.

Have you set goals as to managing your chronic pain condition(s)?

Here are tips I have to offer:

1. Set the expectation as soon as possible in social situations (family, friends, work, etc)
2. With some pain diseases we can not expect to be 100% pain free, but we can learn to manage them. Make your goals realistic, specific, measurable, as stress-free as possible, and achievable
3. Don’t try to accomplish every goal all at once.

What are some of the realistic goals you have set for yourself?

My biggest realistic goal was function… I started with walking each day. I try to walk each day, I had to build up slowly overtime. The week, I walked 2 mins in place, next 2 weeks I did 3 mins each day, then 5 mins, 7 mins, then went for a 5 min walk outside each day for a week… I am now up to 30 mins on a good day outside and on flat surfaces. On a bad day, I may walk 2 mins, just to get my blood circulating. Notice I started with ‘try’ to walk each day. I like you have good and bad days. Trying makes it less stressful and if there is a day that I can only go 1 min without taking a break, that is fine. I don’t have to beat myself up mentally. I also track my activity so that I can look back at my accomplishments and celebrate what I have done, especially on my weaker days.

Now is the time to start your short life attitude. Make a resolution to take care of “I”.

Find your “I am”. An exercise my therapist gave me back in 2002 when I developed Central Pain Syndrome (aka RSD), and felt like I had lost my whole identity. Share some of your “I am’s” here.

I am short, cute, funny, organized, a cheerleader, a wife, a sister, an aunt, spiritual, opinionated, do’er, optimist.

This next section of the chat is on tips for better healthcare as a pain patient.

Do you have trouble finding a provider that treats your condition?

• Finding a doctor that specializes in the condition you are diagnosed with can be a challenge.
• It is important to keep in mind that you are not looking for just any general physician but rather for a physician who has expertise in the treatment and management of your specific illness or condition.
• Find out if the doctor knows about your conditions in-depth is very important. For instance, 1 pain doctor will know more about arthritis and others neuropathy conditions.

While at the doctor’s office what can you do to be heard and helped better?

• Take someone with you.
• Summarize your needs so the doctor gets all of the needed information.
• It is important that you stay on track and focused at your doctor appointments.
• Keep your emotions under control when possible. They treat the mental side of pain first, so if you are presenting depressed or anxiety filled, they are going to note and address that. You want them to get the tools to help the pain cause so led them there.
• Show where it hurts: point to the areas; if it is your whole body, does any part hurt more than the rest or does the pain feel different in different spots?

Are you following doctors’ orders in between appointments?

• Do your homework so you can accomplish your goals
• Be proactive: Research the options your doctor gives you and make sure to choose the one that is best for you
• Chart progress and report back
• Educate the doctor on revisits
  • On progress made
  • Ability to function in daily living activities
  • Any new goals or research information you have found in relation to your condition

Financial… Are you paying attention to medical billing?

• Check Explanation of Benefits against Doctor’s bill
• Don’t be afraid to ask for a cash discount if you don’t have any insurance
• File an appeal if you feel the insurance company got it wrong
  • Example Step Therapy Practices
  • Denial of access to medication or services

Advocacy work. Have you done any calls or meetings with legislators to tell your story?

This comes in many different styles. You can advocate for yourself at the doctor’s office, or you can advocate for yourself and others through legislation outreach.

Here are some of my top tips to legislative advocacy – Keeping in mind that your goal is to develop an ongoing personal relationship with your elected representatives, as well as to influence their position on specific issues or bills, here are a few things to remember when speaking to them:

• Do not be disappointed if your legislator sends an aide. Aides are critical to the process.
• Spend a majority of your time working with legislators who haven’t made up their minds.
• Share your personal story – It helps to make your point. You want them to remember your face when they are making decisions about your health conditions.
• Refer to the talking points and other materials on a one-page info sheet. Leaving behind too much materials will end in them being tossed out, make your points concisely.
• Put broad policy issues in a local perspective. Ex. 100 million Americans, 2.4 million Arizonians – They need to know how the issues will impact local voters
• Let them know you are there to serve as resource. Be a partner for them when it comes to chronic disease/pain.
• Legislators will view you as the expert on the issue, so be sure to know the facts.
• Know your issue & offer solutions that work. Provide facts and figures to back up your position.
• Know who your legislators are before making initial contact on an issue.
• If a legislator gives you a commitment, check back with them later but don’t badger them with phone calls/emails.
  • Find out what legislative committees your legislator serves on.
• Don’t debate with a legislator or give ultimatums such as “I won’t vote for you if you do not support my position.” Respect the legislator’s right to disagree with you.
• Do not assume that your legislator libraries and their impact on the community. Take the time to educate him/her. Do not use jargon.
• Convince your legislator that there is something extra special about your cause, because there will most likely be opposition in to speak with them as well.
• Be organized (prepared; accurate; persuasive; timely; and grateful for their time)
• Be a good listener and hear out what your legislator (or their staff) has to say on the issue.
• Always follow up with a written thank you note and amplify your main points.

Here are some of my favorite Resources – What are some of yours?

1. Wisdo – you are with me here on the app for this chat, so should be easy to find, click around read the resources and get involved in the chronic pain community here.
2. The importance of Health Communities – http://barbyingle.com/importance-health-communities
3. Pain News Network – https://www.painnewsnetwork.org – provides in-depth coverage about chronic pain and pain management
4. Patient Advocate Foundation – patientadvocate.org – provides effective mediation and arbitration services to patients to remove obstacles to healthcare including medical debt crisis, insurance access issues and employment issues for patients with chronic, debilitating and life-threatening illnesses.
5. International Pain Foundation – internationalpain.org – recognizes the value of every person who makes up the chronic pain community. They are guided by their commitment to excellence, leadership and patient empowerment.

It is important to be the “Chief of Staff of Your Own Medical Team”.  Meaning be in control, do your own research, and know what the facts are. The more you know and understand the better off your healthcare will be. Do not let others influence the choices you make without doing your own do diligence and being comfortable with the possible outcomes of your choice. What you chose today can have effects on your tomorrow, so be prepared for what that may be and use your wisdom to guide your medical team. Please check out the www.internationalpain.org and www.barbyingle.com websites for more information on me and resources available that I didn’t get to touch on in this chat. Thank you for allowing me to share my story, hope, and tips with you through Wisdo.