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.
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.
WHAT IS YOUR CAKE?
Barby Ingle, President
Power of Pain Foundation
Author * Advocate * Motivational Speaker
Movie Info:
http://cakemovie.net
https://twitter.com/CAKEtheMovie
https://www.facebook.com/cakemovie?ref=hl
What is CAKE? CAKE is something that you can’t do because you are in pain but wanted to accomplish. When I started to watch this movie, I came in with biases of people in the pain community saying how it was all about addiction and not much on chronic pain. Those people had not yet seen the film. So, I got out may paper and pen and decided to take notes. I thought this movie was a great representation of what I see and hear from millions of pain patients across the United States. This movie is one of the best, in-depth depictions of what we deal with on a daily basis as patients. Here is what I saw in the movie.
I saw the reality of what I have been living with since September 26, 2002 after an auto accident that led me to have no choice but to live with chronic pain. The main character, Claire shows the challenges of living with pain. Her symptoms matched many of the symptoms that I have dealt with on a daily basis. With not only showing the pain that sometimes makes you scream out. They also did a great job showing the loss of energy, balance -coordination issues, body temp regulation problems, depression & anger, dystonia, loss of appetite and vomiting, memory issues (reminders about reminders), and sleeping problems.
The movie also gives a great perspective on some of the treatment options that are available. Claire went through so much to get out of pain, but to no avail. She had to find ways to cope. They showed a wide variety from invasive surgery, medications (not just opioids) but other medication, and aqua therapy. They showed less invasive tools that can help with the coping of life with chronic pain; quiet/dark room or house, music therapy, and even turning to other substances like alcohol.
This movie shows a woman who is processing her own chronic pain from physical injuries, but takes it even further. The script writer was cleaver enough to have the character Claire use of her friend who committed suicide to help process the situation and tell her story (it was easier for us as viewers to follow verses a woman talking to herself, it put a face to the story of the person who committed suicides story). I can say for myself losing over 50 friends in the past 12 years who were living in pain I know how much of a struggle this is and how delicate it is to navigate with those of us still living and fighting this daily battle. We are in a way relieved that our friend is out of pain, but at the same time sad that we are here on earth – left behind. We see how great it would be to be out of pain for eternity, but know that we have a purpose here and it is not our time to go.
CAKE reminded me of a few important lessons. First, you can’t get better by working harder, you have to work smarter. We need to figure out how, where and on what we want to spend our energy pennies[i]. Second, people who don’t live in pain want to know how we do it. We typically say moment by moment, or I don’t know how I do it. We find a way. We negotiate with ourselves to do what must be done, what needs to be done. Does that mean we get to do all we want to be done? No. Does that make us less of a person? No. Thirdly, people in pain take less life for granted. The closet scene where she takes out only a little bit only to make a messy pile outside the closet. That was a step. That was an accomplishment in the daily life of a chronic pain patient. We are not asking for people to save us, we are working to save our energy pennies for what is important in life while still maintaining a life of whatever sort we can muster up.
For those reading this who don’t have chronic pain. Maybe you are a caregiver, or a friend of mine who just wanted to see what I had to say. It won’t hurt if some of my pain friends cover some of these lessons for ourselves either. Here is some life nuggets for you. Yelling at someone you are made at won’t fix anything and really it doesn’t even matter. Why stress yourself? The people who question are the ones on the outside of our inner circle. Everyone grieves differently. People tell you what to do/try so that they feel better about not being able to help you. Other people’s views of someone in pain, even when they have pain themselves is skewed.
A keynote to watching this movie is viewers should remember that medication has to be taken every 4-6 hours to stay in the bloodstream (unless extended release and then 1-2 times a day). Patients are going to need to take them 1-6 times a day depending on the medication, dose and formulation of the medication. Pain like that isn’t just physically limiting – it is morally debilitating. When we don’t get our pain under control it becomes a cycle that at its worst is unbearable and best is survivable. Add to that the injury of being told you may not be able to access the pain medication you need because a physician worries that you may be abusing the medication. Although not directly addressed in this film, it is a problem faced by many who have legitimate need for pain medication. Instead of being treated with compassion, pain patients are too often treated with suspicion. Prescription pain medications are an important component of modern pain management. Abuse and misuse of these products, however, have created a serious and growing public health problem. Opioids remain an important option in the treatment of chronic pain.
Just as the main character Claire does, patients are going to Mexico to get medication or turning to street drugs here in the United State – Its Reality. The question should be, how we can make pain medication available to those who need it and address the legitimate concerns of physicians and law enforcement about misuse? Fortunately, there is good news. One important step towards the goal of creating safer pain medication has been the development of opioids formulated to deter abuse. For patients with pain, help comes in the form of three letters: ADF. Pain medications with abuse deterrent formulation (ADF) make it difficult to tamper with the pills, reducing the risk they will be used improperly. The good news is that several formulations of ADF now exist, giving physicians a range of options for their patients with pain.
As a leader in the pain community and someone who personally advocates for pain patients on a daily basis, I strongly believe that we can combat the issues of abuse while still giving patients who need pain relief a safe, effective and accountable access to these medications. With many new medications, private and government insurers put limits that make it difficult to access the medicines. With the societal cost of limiting pain management so high, such an approach is penny wise and pound foolish. There are many things we can do to increase access to these treatments, but we need to start with the recognition of their value and the promise they hold for many pain patients who have been denied care due to suspicion.
The responsible patients should not be punished by the crackdown on prescription drugs and opioid abuse. There is a need to stem the tide of drug abuse, but not at the detriment to those who need proper and timely care and access to tools for better daily living so they may function in a more productive way in our communities and provide greater benefit to society as a whole. In the movie, there is a scene where Claire has visitors over and chose to skip her medication. This doesn’t show she was addicted it shows a willingness to try to be social and check her physical pain strength, or show courage, or just a desire to be ‘normal’ and not have to rely on medication to get her through. The movie shows her as a responsible patient who shows up to every appointment. Yet, her providers expect you to improve. When you live with chronic pain, improve is relative. More likely, we maintain if we are lucky and work smart at life. There was a scene at the hospital where Claire says, “no more medication”. I’ve been there, I know how hard it is to be poked, prodded, and researched on like a rat. She was also dealing with the stress of loss of a friend, loss of her son and marriage while finding her life boundaries of living with pain.
There are other obstacles in receiving proper and timely care. The movie demonstrates some of these challenges through spotlighting the immense amount of paperwork and complicated medical system (ex: needing referrals). Just facing the invisible disability of living with chronic pain even if you have scars, a cast, or wheelchair can be difficult, especially when learning to navigate the health system. Another life challenge for pain patients addressed in the film CAKE is keeping a ‘normal’ human connection with a partner. All humans need physical contact. Imagine is feeling like someone is cutting you with knives every time they touch your legs. We need to find ways to have positive, personal, and sexual human connection for our own welfare and health benefits
Suspicion is rampant in society when it comes to pain patients. I reacted with a cringe when I watched as Claire’s adrenaline kick in when she saw the man who was responsible for her son’s death. Then, in the next scene you see Claire in bed, not much is expressed as to why she is in bed when she just displayed that much energy and physical strength when most times she doesn’t have it in her to even take a shower. It goes back to how you want to spend your energy pennies, emotional ties to a situation, and knowing that you will pay for your actions later if you overspend or outspend your abilities. Many of the patients I come across in pain are similar to Claire. I see myself the same way most of the time. Mostly due to finding out that my body and mind has limits. I have reached my limits and tried to push beyond only to pay for it in the end, much longer than any of my ‘healthy’ friends. After having a chronic illness for a while, many of us learn to choose where we will spend our energy pennies and what is important enough to warrant a penny, two or more. Also keeping in mind that each patient is different, brings different life experiences to their future, and will react differently to every medication and treatment option than the person standing next to them. Yet, we look and strive for commonalities with our fellow human connections.
Watching the movie brought me back a few years. Before I had a proper treatment plan to address my pain, I too was laying in the car on trips. Having to pack blankets and pillows for comfort and vomit bags for chronic vomiting from the high pain levels. Crying as we drove over bumps and potholes in the road, and knowing that after seeing that doctor, I would have to return to a painful car ride home. Or as in the scene where Claire tries to get the tape off of the box and she just doesn’t have the strength, I am still facing that daily even with a good treatment plan.
What would your dream be if you didn’t have chronic pain? My CAKE would be to continue to raise awareness, take action, and make a difference that brings us together as a society in a unified force for those still living with invisible disabilities. May our lives be easier, less stigmatized, and blessed with good health.
What is YOUR CAKE?
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[i] Caregiver Toolbox: Saving Energy – http://www.painpathways.org/caregiver-toolbox-saving-energy/
I am getting a high number of people asking about my OO and if it really helps (and how well). So I decided to give more details here.
FOR ME: Before OO, I got K for 2 days approximately every 2-3 months. (that was the longest I was able to go without an infusion before December 7, 2012 when I got my OO. In 2013, I got 3 boosters. In 2014, I got 2 boosters. This year, 2015 – my goal is 1 booster (if that). Next year, my goal is none. Those are my goals. Without the OO, there would be no way that would be possible.
It also depends on if I break the OO, etc. (no more hard candy for me)
I haven’t had IV-K since May 2014 and I am doing very well with using the OO (with needed adjustments). I also have not had any opioids since 2009 (even with major surgery and kidney stones, etc.) The Ketamine during procedures has been enough. If I need surgery or major injury, I will use Ketamine, but my hope is the OO is enough and the plan Dr. D came up with for me, has been great.
I don’t like specifying specific treatment & doctors anymore for treatment options because of to many friends and horrible situations they and their families have had to endure from doctors I recommended. In my opinion, Dr. Demerjian is one of the best doctors in the world, and has a great disposition too. He will tell you the truth.
He has worked miracles on me, truly. I have gone in thinking, he won’t be able to help this time. He says, let’s see what we can do? Not, oh, I am amazing, God complex like many other providers I have seen. When he gets my pain down to 0 again, helps my body temp regulation, balance, coordination, dystonia, vision, etc… I call that a miracle. Since December 9, 2012 I haven’t thanked God more for anyone one else in my life.
A chiropractor messed up my jaw – on accident – last wed. So my OO is not fitting in my mouth. (Luckily from recent fMRI tests I had a backup, but I can’t eat with it or sleep with it). So, I am going back to Dr. D for an adjustment next week otherwise, I would of been good for a while.
I am not saying you all should go to Dr. D or that the OO will be what helps you. Like all treatments, it is better for some than others. The next closest doctor that can do what he does that is actively practicing is Dr. Sims (who is also good doctor). I have actually known Dr. Sims longer and seen him work some miracles on others, first hand and from repots back from other patients.
Some who have seen my OO say, oh, my dentist made me one like that… well this one is 80% the same as an appliance/night guard… but the 20% difference is where the miracles happen. For more on the OO please see www.tmjconnection.org
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.
By Barby Ingle
I love it when people say, ‘you look so young’ and ‘I thought you were in your late twenties’. If a few people say it, it may just be a compliment, but for me, many say it. I believe age is an option. Yes, we gain a physical number on paper each year but when you look at your age, most think ‘how do I feel’. Age in this instance is a state of mind. I think people see me as younger than I am because I do look young on the outside, but I also have a playful personality. I know what I have lost, they don’t. Most in my life don’t know who I was, what I was capable of, how athletic I was. They know the person they see in front of them. I don’t drink, smoke or do drugs (that are not prescribed to me). So when people say, become a better you, what does that mean for those of us who are already trying to be the best we can be? For me it meant I wish someone would have told me about preparing for things that we may face or someone we love may face (chronic pain, disease, financial burdens, how to navigate the health system and life in general for that matter).
I wish that I didn’t take life for granted when I was healthy. I had many experiences, most were great. I took them for granted until developing Reflex Sympathetic Dystrophy which stopped me in my tracks. I met my primary care provider (PCP) in 2005. When we met I was in a wheelchair, bathed about once every 7-10 days, and had dystonia in my right hand, arm and foot. I had cut off most of my hair to make it easier on me. I am sure I looked a mess. He never commented to me on how I looked. He worked to get me feeling better he became the first on my ‘team’. He didn’t know what I used to look like. He was shocked to find out that I was a former model, pageant queen, cheerleader, and athlete. After receiving infusion therapy in 2009, I went to see him. I went from wheelchair to walking with him as my main health provider. I changed my hair, I changed my clothes. Two things I could have done before feeling better, but I didn’t put the effort in on most days. When he saw the new me, he asked my husband how it feels to be with a woman who is getting younger. It’s not that I was getting younger, it is my state of mind improved.
Our beliefs and behaviors must shift when we are living with a chronic pain disease, no matter what stage we are in. This shift determines how we feel about our life and health. Often times I would psych myself out. I would say to myself, I can’t do this, I can’t do that. I learned through trial and error what my boundaries are. I kept a journal to learn about myself and I found that my bounds were far past where I thought in my mind. I found that I needed to celebrate each moment, each day. When things got tough and I had to spend days/weeks/months in bed I didn’t need to get down on myself or put stress on myself for what I wasn’t doing. I kept a journal and a made a bucket list during those times. As time has passed, I found ways to accomplish those tasks and come up with new ones. I found that completing tasks is easier, quicker, and more accessible when I live through motivation of starting where I want to end up. Putting it in writing and organizing a plan of action (that is adjustable) is how I began to accomplish my goals.
I found personal incentive by manifesting something on the outside first. I changed my hair. It was a simple enough start. It led me to buying a few new outfits. I created a goal of doing more life experiences instead of gathering stuff to sit around me. I started with 4 outfits that are my ‘experience outfits’, and then came up with activities where I could use the outfits. Starting small on the outside helps to manifest how I feel on inside. Keeping track of where I have been and where I want to be showed me that I am of worth. Eventually my mind and insides caught up to my outward feeling. Was I perfect? No. Was I out of chronic pain? No. But, I did learn to count my miracles.
An experience can’t be taken away from you unless you let it go. Let go of the negative and focus on the positive; in your mind, heart and outside. Keep working on yourself and start with a few goals. Give yourself ‘what to do’s’ instead of just opposing all of the positive things you could have in life. Even in pain you can find ways to get the end of each goal. To change you, YOU have to practice. Am I saying you can just change your pain away? No way, not at all. I am saying you have the ability in you to change how you face your challenges. Find ways to recognize, understand, and consolidate challenges to see the goals you have set come to be. Don’t worry about timelines. If it takes a healthy person 4 years to graduate college, don’t feel bad if it takes you ten. It is okay. Remember, a win is a win. You don’t lose until you give up. Strive to understand the overall gist of your decisions and don’t let setbacks, others’ negativity, others’ guilt beat out your decision. You have the right to be the best YOU possible; start today.
There is an Alzheimer’s clinical trial going on right now where the study drug being investigated will help people with mild to moderate Alzheimer’s disease. The research will test if the study drug improves memory, other mental skills, and overall quality of life in people with Alzheimer’s disease. Here is some basic information:
- Participants must be between 66 – 90 years old
- Participants must be experiencing moderate to severe memory loss, dementia or Alzheimers disease
- This trial is 26 weeks long, requiring 5 visits
- Reasonable travel expenses will be reimbursed
- If you complete the trial you will receive a variable amount for your time and inconvenience
The full study details and eligibility criteria are listed here.
Please complete the online questionnaire to check if you’re eligible for the trial.
If you’re not familiar with clinical trials, here are some FAQs:
What are clinical trials?
Clinical trials are research studies to determine whether investigational drugs or treatments are safe and effective for humans. All new investigational medications and devices must undergo several clinical trials, often involving thousands of people.
Why participate in a clinical trial?
You will have access to new investigational treatments that would be available to the general public only upon approval. You will also receive study-related medical care and attention from clinical trial staff at research facilities. Clinical trials offer hope for many people and an opportunity to help researchers find better treatments for others in the future.
How to Travel When Living with Chronic Pain By Barby Ingle
During this packed month of chronic pain awareness activities it brings to mind all that goes into traveling when we are living with a chronic pain disease.
Traveling concerns: Just because you need to manage pain it does not mean you cannot travel – we just need to plan a little more than the average person!
There are some simple things that can be done ahead of time to help reduce some pain caused by traveling.
- Book directly with your hotel/motel. Use the hotels’ website to review all of the amenities and place a call to book your reservations. Explain your situation and ask for rooms on the first floor or that may be more accessible to those who have issues with walking or need more quiet. Ask about local attractions as well. Take a virtual tour so you know the set up before you get there it will save time! And Energy!
- Plan your transportation from start to finish! If you can book direct flights go for it! Let your airline know you have special needs – use a wheelchair from curbside to boarding. From personal experience it makes a huge difference. Also this may allow and your group to board without the crowds (first or last) but it is worth not being bumped stepped on and so on! Do not be embarrassed – this will save your energy and well being for what is most important – your vacation! When renting a car makes sure it will accommodate a wheelchair /scooter etc it needed. Also do not forget your handicapped parking placard! What a difference that can make at many attraction – even the beach! Many seats on the plane have more leg room the others – look to reserve those! Also check out all your legal rights as a disabled person while traveling. It’s amazing what you may be entitled too! Also a ride to the airport vs. driving yourself. Curbside delivery is so much easier then all of the parking lot issues.
- If you are driving take frequent rest stops – at least every two hours to stretch and move around. We get stiff and sore very quickly.
- Make a list of what you need on the trip and I do not mean just clothes! Besides your medications thinks of neck pillows, heating pads, cold packs, small blanket etc. Some airlines now charge for pillows and blankets so be prepared! Pack this in your personal carry on. I once put all my meds in my carry on and when we changed plans they deemed it was too big for the smaller plane and had to chance it in cargo. Never again! A good back pack to hold all your essentials is a good idea.
- Prioritize your sightseeing! Research your destination and list what you really would like to do! Rank those in order so if a flare up happens you visit the ones that really matters to you. Make time to rest is very important. Plan a sightseeing day and then a day off or half day visits. Maybe your family has a place to visit that you do not have a strong interest in let them go and use that as day of rest! Check out all of the attractions for what accommodations they have for handicapped visitors. Special seating. Separate lines etc. What a difference it can make! Do your research. At Disney we had special seating right up front for shows! Front of the line at many attractions!
- If anyone considers camping for their summer vacation there are a few things to consider such as a good air mattress, the tent in the shade and have a tent large enough to stand in. Standing hunched over will not be helpful!
- A big thing for many of us may be also a change in diet. Simple changes to our routine can often set off many different issues so keep this mind when experimenting! Bring snacks that you normally eat to help out.
- Check the airlines for rules and regulations – especially if leaving the country
- Ask for help! If it’s a family vacation so the family can help! Let their fingers do some research etc.
- Emergency contact info! Your Doctors numbers, family contacts, and keep meds in original containers. Check out local pharmacies or medical centers if you may need care during your trip.
- A few notes on your personal health while traveling. Get plenty of rest whenever you can. Pace yourself and plan breaks.
- Stretch often. Get up from your seat at least once an hour. If you don’t you will just be more stiff and in more pain. Even major athletes have this issue!
- Keep yourself comfortable. Wear loose fitting clothing while traveling. Use lumbar or neck pillows if you will be sitting for long periods of time. Plan your wardrobe inlayers to accommodate temperature changes in cars, planes, attractions and so on.
- Be open about your limitations to those who you are traveling with. Make sure they really do understand what your chronic pain management entails. Pushing ourselves for a special purpose may work and yet it may not – so be careful about overdoing it.
- Plan your medications to maximize their effects while traveling in difficult situations. Do not wait until the flare up starts be preemptive!
- Even day on short trips require planning to make sure that you get the most out of your vacation and to do it without a flare up. Vacations are to be enjoyed and with some fore thought you are your family can enjoy most trips without mishap.
- Vacations are meant to be a break from our very day lives so make it happen. Enjoy and takes lots of pictures so you can prove you where there!
- Check with AAA they can often offer information about traveling with disabilities.
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.
10 HELPFUL HINTS ON THE ROAD TO PAIN RELIEF
By Barby Ingle
- Speak up! You are your best advocate and have a right to timely and effective care.
- Know your limits. By taking on less, you’ll ultimately be able to accomplish more.
- Know your pain. Know options available to you, educate yourself about available treatment options.
- Reach out. Bring a relative or friend to your appointments, accept assistance.
- Seek out information and support. Investigate resources in our community or online.
- Simplify. Work with one provider to manage your pain care as much as possible.
- Take a moment. Listen to your body’s response to stress and anxiety. Make a habit of taking time each day for deep breathing exercises to help ease your pain.
- Take care of yourself. Maintain health habits and stay active to the best of your ability.
- Take stock. Know there will be good days and bad days. Take a moment to focus on the good things in your life.
- Write it down. Use a journal to record your pain levels and questions for your pain care team.