Category: epatient

Things Your Doctor Needs To Hear You Say

Posted on by Grayson

As patients, we often rely on doctors to provide us with the best possible care. However, it’s important to remember that our doctors are only able to help us to the extent that we communicate with them. There are certain things that doctors need to hear from their patients in order to provide the best possible treatment. Let’s explore some of the crucial things that you need to communicate to your doctor during your medical appointments. By doing so, you’ll be better equipped to receive the care you need to get closer to optimal health.

"Things Your Doctor Needs to Hear You Say" with a photo of a patient and a healthcare provider talking

My Symptoms Are Worse Than Usual

When you’re experiencing symptoms, it’s important to understand that managing them is an essential part of receiving appropriate medical care. Your doctor relies on you to provide accurate information about your symptoms, so they can adjust your treatment plan accordingly. Keeping your symptoms under control not only helps you feel better, it can also prevent complications and improve your quality of life.

It’s important to pay attention to your symptoms and recognize when they’re getting worse. This can include an increase in severity, frequency, or duration. Certain symptoms, like fever, pain, or shortness of breath, can also be a sign of a more serious condition. If you notice any changes in your symptoms, it’s important to bring it up with your doctor right away.

How to Accurately Describe Your Symptoms to Your Doctor

Describing your symptoms accurately is crucial for your doctor to make an accurate diagnosis and treatment plan. Try to be as specific as possible, including when your symptoms started, what makes them worse, what makes them better, and any other relevant details. Consider keeping a symptom diary to help you keep track of your symptoms and bring it with you to your appointments.

This can be a daunting task, but it’s an important step in receiving effective treatment. Take notes about your symptoms, including when they occur and how severe they are. Use descriptive words to help your doctor understand what you’re experiencing. Your doctor may also ask you specific questions to help you articulate your symptoms more clearly.

Man pouring capsule onto his palms
Image by rawpixel.com

I’m Not Taking My Medication As Prescribed

Taking medications as prescribed is crucial for managing chronic conditions and preventing complications. Your doctor may need to adjust your medication regimen if you’re not taking your medications as prescribed. They can also provide you with resources to help you remember to take your medications, manage side effects, or reduce costs.

Barriers around medication use are common for many patients. Some reasons why patients don’t take their medications as prescribed include forgetting, side effects, cost, and misunderstanding the instructions. It’s important to be honest with your doctor about any challenges you’re facing with your medication regimen.

How to Talk to Your Doctor About Medication Adherence

Be open and honest with your doctor about any challenges you’re facing with your medication regimen. Your doctor can provide you with resources and support to help you manage your medications. Consider asking for a medication review to ensure that you’re taking the right medications at the right times.

I’m Struggling To Make Lifestyle Changes

Lifestyle changes, like eating a healthy diet, getting regular exercise, and quitting smoking, can have a significant impact on your health. These changes can help ease symptoms, possibly prevent additional chronic conditions, and improve your overall quality of life.

It’s important to understand the benefits of lifestyle changes and how they can improve your health. Your doctor can provide you with resources and support to make these changes, including referrals to a nutritionist, exercise physiologist, or smoking cessation program.

Overcoming Barriers to Making Lifestyle Changes

Making lifestyle changes can be challenging, but there are strategies that can help. These can include breaking down your goals into smaller, achievable steps, finding a support system, and tracking your progress. Work with your doctor to find the best strategies that work for you and your lifestyle.

A transgender woman in a hospital gown speaking to her doctor (who is a transgender man) in an exam room
The Gender Spectrum Collection

I Need More Information About My Diagnosis

Knowing about your diagnosis can help you make informed decisions about your health and treatment options. It can also help you understand what to expect in terms of symptoms and potential complications. Additionally, understanding your diagnosis can help you communicate more effectively with your doctor and other healthcare professionals.

Being diagnosed with a health condition can be overwhelming and confusing. It’s important to take the time to understand what your diagnosis means, what the symptoms are, and what treatment options are available. However, doctors may not always have the time to provide a complete explanation during office visits. That’s why it’s important to speak up if you need more information about your diagnosis.

Asking the Right Questions to Your Doctor About Your Diagnosis

If you need more information about your diagnosis, it’s important to ask your doctor the right questions. Some good questions to ask include: What caused my condition? What are the symptoms and how can I manage them? What are my treatment options? What are the potential risks and benefits of each treatment option? By asking these questions, you can gain a better understanding of your diagnosis and what you can do to manage it.

I Don’t Feel Like My Treatment Plan Is Working

When you’re diagnosed with a health condition, your doctor will likely create a treatment plan to manage your symptoms and improve your overall health. However, not all treatment plans work for everyone. If you don’t feel like your treatment plan is working, it’s important to speak up.

Some signs that your treatment plan may not be working include: Your symptoms aren’t improving or are getting worse; you’re experiencing side effects from your medication; or your condition is interfering with your daily life. If you’re experiencing any of these symptoms, it’s important to talk to your doctor.

If you don’t agree with your doctor’s treatment plan, it’s important to speak up and ask questions. Your doctor should be willing to work with you to find a treatment plan that you feel comfortable with. If you still don’t feel comfortable with the treatment plan after discussion, don’t be afraid to seek a second opinion.

How to Talk to Your Doctor About Treatment Plan Alternatives

If you don’t feel like your treatment plan is working, it’s important to discuss alternative options with your doctor. Some alternative treatment options may include switching medications, adjusting the dosage of your medication, or trying alternative therapies like acupuncture or physical therapy. By discussing these options with your doctor, you can work together to find a treatment plan that works for you.

PS: I pulled together worksheets that can help you evaluate chronic pain treatment and medication changes.

I’m Experiencing Side Effects From My Medication

Medications can be an effective way to manage symptoms and improve your health. However, like all medications, they can come with side effects. It’s important to understand the potential side effects of any medication you’re taking.

If you’re experiencing side effects from your medication, it’s important to report them to your doctor. Your doctor can help you understand whether the side effects are normal or require further attention. They can also help you determine whether you need to adjust your medication dosage or switch to a different medication.

Discussing Medication Alternatives and Adjustments with Your Doctor

If you’re experiencing side effects from your medication, it’s important to discuss alternative treatment options with your doctor. They may be able to adjust your medication dosage or switch you to a different medication. By discussing these options with your doctor, you can find a treatment plan that effectively manages your symptoms without causing unwanted side effects.

woman with fog around her head
Image by rawpixel.com

I’m Concerned About My Mental Health

It’s important to remember that mental health is just as important as physical health. There’s no shame in seeking help for mental health concerns. In fact, talking about your mental health can help reduce stigma and encourage others to seek help.

Mental health problems can manifest in many different ways, including changes in mood, behavior, and cognition. Common symptoms of mental health problems include feeling sad, anxious, irritable or angry, changes in appetite or sleep patterns, and difficulty concentrating. If you notice any changes in your mental health, it’s important to talk to your doctor.

Talking Mental Health with Your Doctor

Your doctor can provide you with resources and referrals for mental health care. This can include therapy, medication, or both. It’s important to be open and honest with your doctor about your mental health concerns, so they can provide you with the best care and support.

I’m Feeling Anxious or Depressed

Mental health is just as important as physical health. If you’re feeling anxious or depressed, it’s important to seek help.

Symptoms of anxiety and depression can include difficulty sleeping, loss of appetite, feelings of hopelessness or helplessness, and trouble concentrating. If you’re experiencing any of these symptoms, it’s important to talk to your doctor.

Talking Mental Health with Your Doctor

If you’re feeling anxious or depressed, it’s important to talk to your doctor. They can help you determine whether you need additional support, such as therapy or medication. By seeking help for your mental health concerns, you can improve your overall well-being and quality of life.

What If I’m Uncomfortable With My Doctor?

If you don’t feel comfortable with your current doctor, it’s important to remember that you have the right to seek out a new healthcare provider. Look for someone who is attentive to your needs, communicates clearly, and makes you feel heard and understood.

If you feel that your doctor isn’t taking your concerns seriously, it’s important to speak up and advocate for yourself. Be clear and direct about your concerns, and provide as much detail as possible to help your doctor understand your perspective.

Takeaway

By being open and honest with your doctor, you can work together to create an effective treatment plan that addresses your unique health needs. Remember to advocate for yourself, ask questions, and communicate any concerns you may have. Your doctor is there to help you, but they need your help in order to provide the best possible care. With these things in mind, you can build a strong partnership with your doctor and take control of your health.

Help Tell the World: #PatientsHavePower

Posted on by Grayson
I am proud to announce that we are official participants in the Patients Have Power campaign run by Clara Health (who runs the Breakthrough Crew!).
This campaign is a Boston based initiative aligning the world’s epicenter of healthcare around one message: Patients Have Power. The movement is comprised of patients, caregivers, allies, nurses, doctors, researchers, members of the healthcare workforce and anyone and everyone who believes in patient power all around the world.
I believe patients should be empowered with the knowledge and resources they need to hold the ultimate power in their healthcare journey and are proud to say that we live the mantra: Patients Have Power.
Interested in getting involved? Show your support by participating in the following:
Declare your support: Join our #PatientsHavePower campaign on Twitter. Click to tweet.
Join the Thunder: Add your voice on Thunderclap to help the message spread! Register here.
Twitter Chat: Join the #PatientsHavePower chat on Thursday, September 7 at 3:00 PM EST.
Patients Have Power Signs: On Thursday, September 7 take a picture of yourself holding up a Patients Have Power sign and share on social media.
Nice cream social & card making: Swing by Mother Juice Kendall Square on Thursday, September 7 between 12:00 and 5:00 PM for vegan ice cream and card making for hospital patients. RSVP here.

 

My Journey to ePatient #RABlog

Posted on by Grayson
This week, I’m participating in RA Blog Week. Today’s topic: how I became an engaged patient.
Yesterday, I talked about my origin story but stopped short of talking about how I became an engaged patient… complete with amazingly old pictures I took on my first laptop (and one from T).
Back when I started this blog, I hadn’t seen a doctor in 13 years. That changed in early 2010 as I got a referral to a rheumatologist and was able to finally get some damn medical care… No thanks to my mother.
I grew up abused and neglected, meaning that medical care for my Systemic Juvenile Arthritis – something integral to my well-being – was not a thing. When I got back into medical care via school nurses in college, they legit told me that I knew my body better than they would and that they couldn’t really help me with anything.
I felt like I was drowning in pain.
I came home and cried while sitting in a bathtub in my dorm apartment trying to ease my pain and calm down – and then made the appointment to get to a rheumy 5-6 months later.
After getting back into medical care, it was clear that many health care peeps that I saw didn’t know about my illness. It was hard to be my own advocate while being a young woman dealing with pain. People didn’t believe me about my pain or on my illnesses. In order to get the right care, I had to become an expert on my illnesses, on the medical experience, and on communicating with health care practitioners.
I had to learn to start questioning the system.
I began to add medical stuff into my life, on top of school textbooks, essays, and working multiple jobs. I moved and got a new health care team.
It was a lot to take on, but the transformation wasn’t complete until I was forced to quit graduate school. I had to step it up, and I did.
I spent hours sifting through academic medical journals, medical textbooks, and contacting some of the experts on my illnesses. I began to get more patients asking me questions and writing pieces I wish I had had early on in my lonely journey – especially those about insurance terms and the like.
And it’s just continued from there.
It’s been quite an interesting journey to go from a college sophomore trying to learn about my illness in order to explain it to the hubby to turning into a patient expert. I wonder what 20-year-old me here would say about that.
What about you? What has your patient journey been like?

 

How to act to have your doctor take your pain seriously (sarcastic post)

Posted on by Grayson
how to act to have your doctor take your pain seriously
Physicians are supposed to be able to navigate around emotional situations and decisions to solve issues and provide care for people. Sometimes the way we act can, apparently, still influence thoughts regarding our health. This is especially true for those of us dealing with chronic health issues and invisible disabilities.
 
This post is, in part, a sarcastic piece but also a piece in which we discuss the often ridiculous experiences patients have due to looks, actions, and assumptions.
 

1. Do not smile. Ever.

I went to my a former general practitioner knowing, essentially, that I had a dental abscess. I was looking for antibiotics to help treat the issue or some guidance on what to do. When I arrived, my doctor was less than compassionate. Because of the fact that I’m a bubbly person who is polite and smiles, I wasn’t taken seriously. He literally laughed in my face and said it was a pimple when my reaction upon him applying pressure to it (which, btw, is a no-no) wasn’t as horrible as he expected. I replied that I deal with very high numbers on the pain scale fairly often and that it’s pretty ridiculous to expect every person to react the same. Long story short: it took my (now-former) rheumatologist’s office seeing me two weeks later for someone to treat me for the abscess.
 
Tip: Always look pained while at the doctor for a pain-related issue.
 

2. Do not be fat.

I have so many stories I could share here. One friend had tonsillitis that a physician refused to do anything about, despite the obvious diagnosis, because she was overweight and that would eventually cause breathing issues. He also did no actual exam to look at the tonsils. Another friend was told that her rare neurological headache condition was caused by her weight. The most frightful thing about this situation is that the physician seen is one of the top experts in this type of condition. One of my favorite patient people was told that her abnormally heavy period (menorrhagia) would be solved by losing weight. She was told this at 15 and then was instructed on ways to lose weight, especially withholding food from herself, by the doctor. I could keep going, but then I might break my laptop out of anger.
 
Tip: Don’t be a part of 36% of Americans within the overweight or obese guidelines, even if that’s due to muscle or an issue related to your illness, disability, or pain.
 

3. Do not be poor.

Not only do those living in poverty have to deal with issues related to access to food and medical care in the first place, but when they do see a healthcare professional, they’re basically dismissed. One friend, also dealing with Still’s, was told that his abdominal pain was being caused by a horrible diet – a diet that one keeps when one is poor, by the way. In the end, his gallbladder had to be removed via emergency surgery with a long course of antibiotics. Another friend’s specialist asked if she had an exit strategy to get off of welfare. She’s not on ‘welfare’ as she works, but does receive some forms of public assistance. If you’re uninsured or underinsured, you can expect to not be fully treated or even fully evaluated for an issue… even one as fairly obvious as a staph infection in a patient with a history of them.
 
Tip: Pick yourself up by your bootstraps and stop being poor already.
 

4. Do not be a woman.

There is so much to say here – especially for those of us who fall into additional marginalized communities such as those with disability or people of color. If you suffer from any pain related to your reproductive organs, you may be misdiagnosed with sciatica, not even treated, or told to ‘suck it up’ because all women have pain ‘down there.’
 
Tip: Struggle to be more masculine to please HCPs.
 

5. Do not have a mental health issue (or fibromyalgia).

If you have a mental health issue, real or perceived, you can expect for misdiagnoses to follow you around. One of my favorite people in the entire world was being treated for some thyroid issues and depression with the thought that the vast majority of her issues were related to her depression. Fast forward almost ten years and she has been diagnosed FINALLY with Hashimoto’s Disease, an autoimmune condition. Fibromyalgia is often seen as a mental health issue due to the lack of belief by many physicians in the disease. This is despite the fact that it’s been proven to be a malfunction in the Central Nervous System. Many women are diagnosed with fibromyalgia to shut them up and give their perceived hypochondria a diagnosis.
 
Tip: Do not ever wind up with a controversial illness that has a stigma associated with it.
 

6. Do not dress up for your appointment.

I have learned the hard way that dressing nicely when I say I’m in pain is only beneficial is I have come straight from work. Doctors do tend to take other ‘professionals’ seriously. That said, if I dress up too much, then there are questions about how I would have the energy while in pain to do so. This isn’t the case anymore but has been in the past.
 
Tip: Rags are too dressed-down, but high heels are too dressed-up. Try sweatpants with a minimum of one hole but no more than two to illustrate that you’re not poor but you also hurt enough to not give a shit about looks.
 

7. Do not let your pain control you.

Be in enough pain for the pain to be more obvious, but not in enough pain that it alters how you talk to or interact with healthcare peeps. They’re trained to deal with these emotions. It should not be that hard for them to look past the emotions related with, say, a cluster headache in order to ask the right questions to provide the right treatment.
 
Tip: Learn to be a Vulcan.

 

Top 5 patient rules you should break

Posted on by Grayson
Despite working on leaving behind our paternalistic past, some of the things that are hardest to change in healthcare pertain to how patients are supposed to act.
I’m here to tell you as a fellow patient and health activist: It’s okay to break these seemingly-unchanging rules.
1. Don’t question.
There is an epidemic among patients, something that we have the power to attack and change – silence.
Many patients, yours truly occasionally included, struggle with the ability to speak up to someone who seems to be more educated on medical issues than ourselves.
We have to start remembering, though, that we are experts in our bodies and our illnesses. Even if you don’t know the mechanisms behind what your illness entails, you know something that your physicians don’t – how your illness truly affects your quality of life.
It’s time that we start speaking up when we have a difference of opinion in the physician’s office.
2. Remember that the physician knows much more than you.
In order to fight rule one, we have to start learning about the mechanisms, medications, and complications associated with our illnesses.
If you have the ability to, head to a library and pick up (legitimate) books on your illnesses. Go to the nearest medical school or contact a provider/professor there to ask about learning more. Get in touch with non-profit organizations to learn what resources and information they can offer to help you in your journey.
We have to become our own advocates in order to get the care we deserve.
3. Don’t bring in outside information.
Many physicians are busy and may sneer at the idea of a patient bringing in materials for them to look over. Others won’t look at information such as sleep or fitness trackers.
Some even refuse to look at pictures or other visual documentation of an illness.
Frankly, that is a load of BS.
If the goal is to help a patient, physicians should be willing to look at this information. Do not hesitate to bring it in and request that they look over it – even if it is later in their day after you’ve left. Follow up via email or your Electronic Medical Record (EMR) portal.
Just remember that they may not take it well.
Without documentation of my rashes as a child, we may not have found out that I had SJIA instead of leukemia. This effort can literally save lives.
4. Be polite no matter what.
It’s common in our society to ask how someone is and, when they ask you back, to respond in a polite manner something along the lines of “doing well, thanks.”
This is something we have to unlearn when it comes to the medical world.
Should you be respectful? Absolutely. Polite responses such as this, though, will often lead to physicians not believing fully what you’re describing.
Smiling apparently does, too, according to one of my former PCPs.
5. Keep non-medical or sensitive issues private.
It’s a common thing to think that physicians have no interest in what your life outside of your medical issues is.
The reality is that many physicians take that mindset.
However, it’s important for physicians to know when things in your home and/or work life are changing.
If you’re having an issue sexually, for example, this could be a sign of heart disease or other important health issues. The stress of planning a wedding, moving, or trying to get pregnant can cause additional issues.
In order to treat us as whole people, physicians need to hear what our lives are fully like. Is that easy in a 10-minute appointment? Nope. But you have the right to get your questions addressed and answered.
What would you add to this list?

 

The #1 thing you have to do to be a ‘good’ patient

Posted on by Grayson
We often discuss the qualities we want to see in the perfect physician –  the compassionate one who comes in and just gets what you’re going through.
What if we turned the tables?
What is the top quality that we need to be the best patients we can be?
Be present.
When I say ‘be present’ I don’t mean that simply showing up will make you a great patient.
In my experiences with PTSD, I have had to learn to be present. I have to focus on the here and now in order to protect myself from the ifs, whens, and weres.
When I say ‘be present,’ I mean to work on mindfulness, the practice that helps us to embrace the current moment.
Our physicians are busy. We are not their only patients. Depending on their practice and where it is located, they may be responsible for upwards of 2000 patients.
Their minds are often thinking through their to-do list for later, who they need to finish charts for while they work into the wee hours of the morning at home.
They may be thinking about the checklists we all create in our heads regarding diagnoses and other issues.
In order to get the best care from our physicians, sometimes we need to be here now.
We get busy, too. Perhaps we are juggling too much on our plates like our physicians do daily.
That makes being present all the more important.
By being present and focused, we can ensure that we are actively engaged in conversations with our health care team.
If we are not, we may miss sharing important pieces of the diagnostic puzzle with our HCPs. They may miss asking questions that lead us there.
“But how am I supposed to be focused when I have 8,225,953 things going on??”
Some people find making lists very helpful in the process of being present and focused on the task at hand. Others enjoy exploring mental and/or physical grounding techniques. There are other tips over on the resources page.
Meditation can help us to cultivate this presence and, more importantly almost, the ability to be kind to ourselves when we’re not able to be as mindful and present as we like.
Do you practice mindfulness? Have you found it helps you with being present at appointments?

 

The top 3 lies people believe about chronic illness

Posted on by Grayson
Chronic illness is, truly, the gift that keeps on giving.
It continues to cause medical issues in your life despite treatments, but it also gives family and friends lovely new ways to believe you’re inferior.
Here are the top 3 lies people tend to believe about chronic illness:
1. You caused your illness.
Regardless of whether you have a type of cancer or autoimmune disease or mental health issue, everyone loves to believe that you have caused your illness.
Society loves to blame the victim, and that’s no different in healthcare than it is in criminal cases.
The truth is that no patient or victim has done anything to deserve the wrongs they endure.
You did not cause your illness.
You did not bring this upon yourself.
This is not some karmic retribution for a past wrong.
2. You could walk a mile yesterday, so you can definitely do it today.
The vast majority of chronic illnesses can rapidly change how we feel.
One day, I can attempt to run. The next, I can barely move… Hence, part of why I don’t try to run anymore.
I have seen the same in a variety of patients.
Just because we could do something before does not mean we can right now.
3. You just want to stay at home and be lazy.
Um, no?
Many patients have had great social lives pre-diagnosis with a chronic illness. We don’t necessarily want to be hermits.
We want to come to your weddings, baby showers, nights out, and friend vacations.
I want to go to comic con and not have to have my husband repeatedly rub my spine while I cry.
I want to be able to stand wearing clothes so I can go to work without missing so many days.
I just want to be able to do what I want to do. No other patients are any different.
Do you believe any of these? What would YOU put in your top 3?

 

Opiates for pain relief: what patients have to say

Posted on by Grayson
Recently, there have been many discussions centered around opioids and other pain medication. This ranges from the speculation that opioids are a gateway to heroin addiction to the overprescription of these drugs. As a former Oregonian, it saddened me to see Senator Ron Wyden embrace the CDC prescription standards for opiates. These guidelines do a world of harm to chronic pain patients.
 
There is no denying that there are people for whom these medications are bad news. The costs to employers specifically can be astronomical. Heroin use rates among younger people are on the decline, so who are primary abusers and users? Middle aged white people. 
 
If you become addicted to opioids, you *may* be more likely to move to illicit drugs. 
 
What about those of us who need to utilize these pain medications for relief? Those of us who can stay on a consistent dose without increasing, as those with addiction issues often do? We are often labeled as ‘dependent’ but that’s only due to the positive impact made on our lives due to these medications, that we do rely on them to be able to function, but that’s not the same way an addiction presents.
 
According to the National Safety Council, “Studies have shown NSAIDs are just as strong as the opioids.” However, some the information cited involves combining multiple NSAID types – something that most of us in chronic pain are told NEVER to do in order to protect a liver that already works incredibly hard to process other medications. Also, the FDA may not believe the benefits of those outweigh the risk either.
 
As someone who constantly takes NSAIDs, I can certainly say that they do not provide the same level of relief to chronic pain patients. I’ve been taking NSAIDs since age 7 due to my Systemic Juvenile Idiopathic Arthritis. I’ve had to switch NSAIDs a few times due to them losing effectiveness and harming my GI system.
 
As my friend Mariah points out, better care has led to an increase in opioid prescriptions. She discusses a session at the American College of Rheumatology 2015 Conference where two physicians discussed the use of opioids for chronic pain not related to cancer. One physician remained staunchly against the prescription of opioids for chronic pain patients while the other believed in using them depending on the patient, as refusing them can deny patients the pain relief they so desperately need.
 
Many questions come up during this piece for me. Why is chronic pain unrelated to cancer being compared to that related to cancer?
 
With opioids, my friends with rheumatic illnesses can move around enough to keep pain at bay, sleep at night in order to work a normal 9-5, or spend time enriching the lives of their children instead of sitting in pain.
 
I asked some of the patients I know to share a bit about their journeys with pain medications:
 
One patient in Texas said: 

My Dr said that she wants to physically see me each month to get my script. I don’t have insurance and can’t afford to do that each month. Our free clinic won’t write for them either… Our health care system sucks! Not sure what I can do though.

Another in Texas: 

I couldn’t function without them. My GP prescribes them. My old rheum would drug test if you wanted him to prescribe. Well, I also smoke marijuana and that would have me booted from the practice altogether. I get them where I can bypass that.

Yet another patient in Texas: 

If I didn’t have spousal support/alimony, I wouldn’t be able to afford seeing a pain specialist. It’s so freaking expensive!

A patient in the New York area:

I have only ever been prescribed opiods in the ER or by a GP in a flare. I love my rheum but he doesn’t do pain management of controlled substances because of the current laws and how much more difficult it will make his practice and how many fewer patients he would have because of the increased visit frequency required.

One pt in South Carolina: 

I’m on Diluadid 2mg twice a day. It managed my chronic arthritic pain extremely well at first, but all it does now is make me sleepy. Does it manage my pain? Yes and no. When I’m flaring there is NOTHING that makes my pain go away. Not even high dose pain meds given by IV in the hospital. Nothing. That’s the way my arthritis is. Intractable. So every thirty days I pick up my prescription for a 30-day supply and muddle through another month of trying to manage my pain without really managing my pain!

Me?
 
Opiates tend to not work well for me because of my allergies, frankly. I can’t do Tylenol at all, so hydrocodone on its own is what I can take – Zohydro. It’s strong stuff and, frankly, I reserve it for the worst pain I have. There are types of pain that doesn’t fully touch for me, like the bursitis I had this time last year that required a few bursal injections.
 
 
Still, it took care of the pain associated with limping and favoring one leg over the other. It allowed me enough of a break to be able to sleep some – even on high doses of prednisone. I was treated like a drug addict and criminal picking them up from Walgreens, but at least they didn’t turn me away.
 
For that, I am grateful.
 
I take Lyrica, another controlled substance, daily. Before I started on that, my fibromyalgia was so bad that I was missing 1-2 days of work within a two week period. My allodynia was so bad that I couldn’t wear clothing – all I could wear was my fleece zebra blanket.
 
Unfortunately, that is not proper work attire, save for when I’m blogging.
 
Now that I’m on a good Lyrica dose, I do okay. Currently, I’m in a fibro flare and have missed four days of work in a month’s time due to it, but before that I was doing pretty well.
 
Without my Lyrica, I’d be unable to work.
 
 
I also wouldn’t be able to get the physical contact I so love from my husband.
 
Other young people I’ve spoken with have shared how they are often forced into signing contracts, jumping through ridiculous hoops to get any semblance of pain relief. We’re sent to pain management clinics where we’re told the solution to our pain is to lose weight, exercise, stop eating poor food, and think positively. We come to fear those visits, to fear the times we have to utilize the emergency room due to overwhelming pain. 
 
This leads to increased pain and mental anguish as well as costing the healthcare systems more in the long run. When we chronic pain patients disregard our own pain, it can lead to hospitalizations, surgeries, and worse.
 
Chronic pain patients are often female. Due to our gender, we are not believed about pain as it is. We need to examine, as well, the way we approach racial issues and pain relief… and poverty, too.
 
Do you want to know why we may seem desperate? 
 
We’ve seen our (former) primary physician who laughed an abscess off as a pimple, wanted us to keep taking our immune-system-suppressing medications, and told us to grow up.
 
We’ve researched pain and learned about how negatively it impacts all aspects of our lives, from interpersonal relationships to even how intelligent we are.
 
We’ve been interviewed and had people belittle us about our pain relief.
 

Since there is no way to know who will become addicted, shouldn’t the focus be on supporting social services that help to check on people living with chronic pain who are on these medications? Shouldn’t we be embracing conversation starters like the recent Super Bowl commercial about Opioid-Induced Constipation instead of making poop jokes & assuming everyone on pain medications is an addict? Should health activists be taking over important areas in other healthcare issues to try to make a point to the Bill Mahers of the world? (Hint: no).

 Approximately less than 9% of people who have a substance abuse problem abuse opioids. Some of them are even physicians. What about them? Do they not also deserve pain relief? Our respect, love, and help instead of being vilified?

 
 
 

 

8 ways to get the most out of your doctor appointments

Posted on by Grayson

I hear a lot of complaints from other patients on how difficult it can be to work and communicate with physicians, especially given how short appointments often are now. I work with physicians for a living, so I get their side of it too – they have a lot of pressure to hit certain benchmarks and have a certain number of patients, etc.

Docs don’t like the current system any more than patients do.

Short of overhauling the whole system, which is a great idea but a topic for another day, what can patients do in order to get the most from physicians?

First things first, an initial appointment with a provider can be quite difficult. There is so much to cover and examine, especially for us that are chronically ill, that we often stick with that provider with little examination of that choice.

The first appointment with a provider should be treated like an interview.

Yes, there will be things that have to be covered, but you have the power to guide the conversation and, indeed, make it a two-way conversation rather than a one-way dictation on their part.

 

  • Ask them what they know about your current diagnoses and the medications you’re on.If they don’t know much, are they willing to learn? If not, hightail it out of there!
  • Make sure they are willing to communicate with various providers.My rheumy works with my PCP, ophthalmologist, and my dentist. My PCP in turn works with everyone else. This way, my PCP and rheumy are all on top of what is going on with me. It allows them to know much more about my personal care than I could really tell them.It also helps my dentist know when to pre-medicate for dental procedures.
  • Ask about their feelings on involvement in patient organizations like the Arthritis Foundation.My rheumy is on the local AF board. Many others are at least somewhat involved with chronic illness organizations. Ask them which ones they like and why – it could lead you to more resources.Likewise, you can help your physician learn about great organizations out there, too.
  • Ask about their feeling on utilizing technology to communicate versus phone calls.I love MyChart. So much. As someone with anxiety, phone calls are not my favorite – and if I’m not doing well, the last thing I want to do is wait on hold and then leave a message and then wait for a call back from the nurse, who has to talk to the doc…If your doc loves MyChart and you do too? Go for it! If neither of you does, that’s fine too.

    The most important thing is to set up the main communication method.

  • Ask how they feel about engaged patients bringing in information for them to review.If you’re the type of person who likes to read the latest medical journals for new research and medication information and your doctor doesn’t like that, you won’t be a good fit for each other. It’s neither bad nor good, just an incompatibility.
  • Bring someone with you.If you’re having a bad brain fog moment, having another person at your appointments really helps.It can especially help because we really only take in a small amount of what is discussed at an appointment, no matter how our brain fog is doing.

    What I do is text my hubby right as I’m leaving my appointments. It helps me go over main points and allows me to scan my brain for others things that were discussed.

  • Prepare for visits.I’m a list person. So many lists. Very write.What I do to prep for my appointments is I’ll look back over my social media for the last few weeks to see how I’ve been doing publicly versus how I think I’ve been doing. The reality is I’m always slightly worse than I think I am in the moment, so checking social media helps.

    Then I write down on a little half sheet of paper the basic topic with some trigger words. I might even print out a blog post if it seems like it will help.

    Some people use diaries. Others write on their calendars or use apps.

    Whatever works for you, make sure you bring topics to address and don’t let the doc go until you’ve hit all the topics on your list.

  • Tape record or videotape visits, with the consent of your provider.Not all physicians will be down with this and it’s certainly something you need to discuss. However, I know many people whose physicians will record appointments so that brain fog and memory issues don’t get in the way.This is also handy for showing loved ones how the appointment went and ask for their help on certain tasks.
What are your tips for getting the most from a doctor’s appointment?

My illnesses make it hard to do my job, but not in the way you’d think

Posted on by Grayson
At a not-so-recent meeting at work, I was put in a very awkward position and now I don’t know what to do.

I can’t go into a lot of the details, but some people in the meeting were speaking ill of someone in the political scene by comparing them to children needing special education… and laughing uproariously about it. I didn’t laugh, but I also said nothing.

At other meetings, there is little involvement from patients. I’ve tried to advocate strongly for it, but things already move too slowly or we’re not at the place in the process yet.

Don’t get me wrong. I work with some amazing people, and many of them love the work I do on patient things and health activism. But that doesn’t change the fact that there are others who don’t get it, who turn around and use conditions of patients they see every day to mock someone else, and then don’t get that it’s inappropriate.

Sometimes that translates to having a really hard time doing my job because of it and I don’t know what to do.

Issues of job security make it so that I want to keep my mouth shut. My entire being is screaming at me for saying nothing. How is it that these doctors I see far more often than my own can make me feel so inferior? What am I doing here in this job? How can I be an ePatient when I won’t speak up for others in all aspects of my life?

This meeting was pre-MedX and, honestly, if this happened again, I would speak up now. I’m sure docs would think it’s not appropriate behavior to do so, but I also don’t care so much now. People matter, especially in healthcare, and if you’re picking on people with ableism involved? Maybe you shouldn’t practice anymore.

Oh hey, you should join us for…