Wednesday, May 23, 2018




As I attempted to write my post the past few days to cover the theory, by Elisabeth Kubler Ross, on the 5 Stages of Loss, denial, bargaining, anger, depression and acceptance, I realized I needed to change my topic. My intention was to help with awareness regarding these stages of loss so that all of us suffering with chronic pain would know this is normal and that we are not alone in all these emotions and behaviors. But, as I was writing about the stages of loss I realized I needed to address the losses themselves first and why they have so much effect on our lives.

Dealing with the horrendous unrelenting pain is bad enough for us all! But then to deal with so many losses, as well as the horrible emotions due to all these losses we endure, can seem unrelenting and leave us feeling as if a part of us has died. It is hard to realize all THIS is a part of our "new “normal!”

Dissecting all the effects that chronic pain has on my life the last 4 years with all the losses it brought and trying to put them into words is pretty daunting! I just have to admit this is very difficult to write about. Please know I am not complaining! I just want to be real in letting you know that trying to zero in on one particular area to write about, when so many subjects to cover are flooding my mind, as well as being in pain, is extremely challenging! As I attempt to break down all the losses to write about for the next post on "The 5 Stages of Loss," many emotions I went through just kept coming back! We really do need to take a look at them, as hard as that is to do, and see why they affect our lives so drastically. Then we can look at how to rebuild from there!

Maslow’s theory,, basically defines that each person has definite needs that are common to all people.  Need is defined as something that is desirable, useful or necessary. These human needs are physiological and psychological conditions that an individual must meet to be able to meet a state of health or well-being.  In theory, we require to have the basic needs met before we can go on to the next level. As these definite needs, “that are common to all people,” are met we then can grow and eventually find self-actualization.

Thursday, May 17, 2018

The FDA is holding a public meeting for chronic pain patients in July to hear our stories. You can make comments as part of the registration process. Register below to attend in person or via webinar! This is imperative for all of us that live with chronic pain, are caretakers and/or healthcare workers to let them know how we have been affected by the CDC regulations. Finding appropriate care was difficult enough prior to the situation with the CDC regulations and has become almost nonexistent, leaving many untreated and even more undertreated as before. Please fill out your strory while registering so your voice can be heard!

FDA Invitation to a Public Meeting
Dear ACPA Facilitators,
On behalf of the Food and Drug Administration (FDA), we invite you to an upcoming public meeting on chronic pain to be held July 9, 2018 from 10 am to 4 pm (EDT) at the FDA Campus in Silver Spring, Maryland. Specific details are outlined below. 
The purpose of the meeting is to gather patients’ perspectives on chronic pain, views on treatment approaches, and challenges or barriers to accessing treatments for chronic pain. FDA is particularly interested in hearing from patients who experience chronic pain that is managed with analgesic medications such as opioids, acetaminophen, nonsteroidal anti-inflammatory drugs (NSAIDs), antidepressants; other medications; and non-pharmacologic interventions or therapies.
This meeting is an exciting opportunity for patients to bring their voice to FDA and the medical product development process. We’re asking you to help make this meeting a success by encouraging patients to participate either in-person or through the live webcast. Please direct individuals with chronic pain, their family members and/or caregivers to the links below to register, and explore the discussion questions and meeting format. 

Background: Viewing past meeting materials on FDA and Patient-Focused Drug Development in advance may be helpful in preparing for the meeting.
The American Chronic Pain Association has been accepted by the U.S. Office of Personnel Management for the inclusion in the fall 2013 Combined Federal Campaign as a member of Health & Medical Research Charities of America. If you work for the Federal Government and would like to designate the ACPA for a contribution, please use our CFC number 10549. This is only valid for CFC Members 
American Chronic Pain Association | P.O. Box 850Rocklin, CA 95677 800-533-3231
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Wednesday, April 4, 2018

Cleaning Tips For Easier Living with Chronic Pain - Part 2


In the previous blog post (PART 1) we looked at the stages of cleaning for those with chronic pain, the stress, embarrassment, humiliation and the physical intolerance we endure. We discussed that to not have the ability to do what it takes to achieve what we would like, leaves us struggling, not just physically, but emotionally as well. We want to find contentment in having things look nice and orderly! 

In order to make things more doable for myself, I try to incorporate, as able, some time management, work simplifications, energy conservation and joint protections techniques taught by occupational therapists. There are many suggestions and ideas to look at, so I will cover these in several post due to the length of each post.

The first thing I will share is how I break down weekly cleaning into several days, as able. (Everything recommended is of course given with the “as able” clause, because many of our days just don’t go as planned and we can only do as we are able! 

Set Yourself a Schedule!
Breaking our weekly activities down into daily tasks is the first of many tips.  When I was a little girl my mom had a day for each task, laundry day, cleaning day, ironing day and shopping day.
Image result for scheduleFor those of us suffering with chronic pain we have to break it down into even smaller activities to make things doable. It may seem pretty simplified, however, as you well know, that is exactly what is needed!  Otherwise, it becomes overwhelming and leaves us wanting to give up before we even get started!

Setting a Weekly Schedule
This is part of a schedule I try to maintain: Monday - Pick up clutter around the house and putting where it belongs. I try to do this a bit every day.  (I do ask hubby to pick up his stuff and help)

Tuesday - Laundry washed. Dusting (not every week)

Wednesday - Laundry folded and put away. Wednesday evening – I go grocery shopping with hubby if I am able, if not he goes alone.

Thursday - Bathrooms-sanitize counter tops, tubs/showers and toilets

Friday - water plants, make phone calls (weekly) and do bills (once a month) I even do a bit of laundry. I hang what needs hanging and the rest sits in the laundry basket until I fold it the following week.

Vacuum – iRobot “Rosie” does this, or hubby does. Wash floors, usually once a month. I am physically incapable of vacuuming or washing the floors. It leaves me in bed for 3-4 days due to the nerve damage and other spine issues.

Image result for irobot on floor pic
You might consider incorporating a weekly schedule. Hopefully, if you don’t already do this, it will give some sense of how to go about making a big job into smaller jobs and be more tolerable physically, leading to giving us a sense of well-being and accomplishment. I know that this is not doable for many, but it can be for some.

I found these online for you to look at. Click on the titles if you want one.


You might consider filling it out with pencil so you can change it as you want as you figure out what is best. 

More tips to be provided in the next blog post!

Meeting with Your Health Care Provider -During and After the Visit

Meeting with Your Health Care Provider – During and After the Visit

In the previous blog post, Meeting with Your Health Care Provider – How to Prepare, (click here to access that post). I shared many tips on how to arrive at the appointment as prepared and organized as possible. Having a basic plan can help make the most of your appointment whether you are starting with a new health care provider or continuing with one you've seen for years. This is extremely important, not only for us, but also for the health care providers we see.  
In this blog post we will look at tips for how to best utilize that information we prepared during the limited amount of time they have to spend with us with for the best chance to leave with all the answers we need, a proper assessment and a treatment plan, as well as what to do after the appointment.

During the Visit

  •  Medical history – don’t forget to have this with you so you can refer to it as needed. I bring a copy for them. That way if the health care provider chooses to review it they can. Many have asked if they could keep it for my medical record (this was discussed in the previous blog post, click here to access it).

  •  Arrive 15 minutes early – this allows for you to complete any paper work required.

  •  Fill out any forms completely and legibly – be honest with all questions asked and refer to the medical history you have for any information requested.

  • Bring something to keep you occupied while waiting - sometimes there are unavoidable delays.  
  • Be respectful - staying focused with your questions and concerns shows respect of the health care providers’ time during the appointment. Refer to your list of issues, symptoms and questions you wrote down ahead of time in your notebook so you don’t forget anything. 

  • Function - Share how your problems are affecting your everyday life, what you’re not able to do during the day because of the issue you’re dealing with (sleeping, bathing, dressing, walking, standing, sitting, cooking, getting in and out of bed, off and on the toilet, to the toilet, etc).

  • Take Notes - Write down in your notebook things discussed by your provider that you don’t want to forget. Remember it is okay to ask for clarification if you do not understand what a prescription is for, why a test is being ordered or any other treatment that is needed.

  • Ask for clarification - Remember it is okay to ask for clarification if you do not understand what a prescription is for, why a test is being ordered or any other treatment that is needed.

  •  Be honest - with ALL the information you provide. Even with the embarrassing questions they ask! It is tempting to say things like you are, “pooping just fine!” because it’s too personal to answer that you’re constipated or have the “D” word. Or you tell them what you think they want to hear about your drinking, smoking, exercising, sex life, etc. However, how can they properly diagnose you or recommend the best treatment if don’t share what is really going on? (Pssst…By the way, we all poop and pee! And if we are having issues with pooping, we can become impacted and people do die from that!)

  • Ask for a referral - many chronic pain patients need to be seen by other specialists, ask if he feels you need a referral if not offering one or if you think he isn’t helping you as you’d like.

  • Discussing a referral - if you have a particular specialist you would like to see, ask if he/she feels that particular specialist is appropriate for your situation. This will save a lot of time and money if you by chance go to the wrong type of specialist.

  • Follow-up appointment – if a follow-up appointment is not mentioned or is not scheduled, be sure to ask if you need to have a follow-up visit.

  • Questions - ask who you can call if you have any questions after the appointment. Many physician offices now have services called a Patient Portal that is available to patients. You can access a Patient Portal from any device with Internet capability to view your personal health information, communicate with your providers, request medication refills, and view lab results, as well as many other services.

After the Visit

If you were given a referral make sure to:

  •  Verify Your Insurance and Referral Information - contact your insurance company for referral requirements. Check that the physician you have been referred to is a preferred provider and that your visit will be covered. Check their ratings to be sure you want to see them. See this blog article, Tips for Finding a Physician and Other Health Care Provider, to find information and links on how to find information and ratings.

  •   Make an Appointment with the Specialist - once your health plan has approved the referral, you may call and make your appointment with the specialist. In some cases, the referring doctor may book the first appointment for you.

  • Verify Medical Records Sent – you will want to call and make sure that any relevant medical records have been sent to the specialist prior to your appointment.

  •  Patience - Remember, it can often take time to resolve an issue, so be patient! It may take several trials of different medications or treatments’, testing of various kinds and several visits with a variety of specialists to find out what is going on and get a plan of care. Often people will get frustrated and go see another provider when they have been trialing various treatments and nothing has been working.

  •  Switching Providers - Don’t be afraid to switch health care providers if you find that you are not compatible or are not getting the results you want with your concerns. However, before switching, consider the following:

o   Don’t up and leave if the health care provider is not able to help you on the first or second try. (Unless of course there are extenuating circumstances).
o   Discuss your concerns with the health care provider before leaving to be sure there is no miscommunication. It may save frustration, time and money.
o   It requires being assertive and explaining specifically what your concerns are.
o    Make a list of these concerns before you go into see your physician so you’re able to completely discuss them and ask what specifically they can do to help you.
o    However, if you feel it is not a good fit for whatever reasons, know it is okay to find someone who is able to address your issues and do something proactive.

 Don’t settle for being told that there’s nothing wrong with you due to they aren’t able to find anything with blood tests, x-rays, MRIs, or other tests. Get another opinion! Sometimes tests are not read properly, or some other error may have occurred. 

·         Hopefully, these suggestions will give you enough information to have a successful visit with your health care provider which can lead to obtaining the best plan of care possible.

  • Sadly, it often takes seeing a few health care providers to find one that is a good fit. If things don’t work out with a health care provider, please don’t make the mistake many people do, don’t go home and give up! I have come across too many suffering over the years that do this! Your health and happiness is too important for that!
Keep seeking another health care provider until you have answers and results you deserve! There are many great physicians out there; sometimes it takes a few trials to find one. Click here to see the blog post regarding Tips for Finding a Physician and other Health Care Provider.