Category: medical monday

white background with a photo of a pipe in the foreground and pot plants in the background and black text underneath: "Research on Marijuana and Chronic Pain" and "Not Standing Still's Disease"

Research on Marijuana and Chronic Pain

Posted on by Grayson

As a proponent of medical marijuana, one of the recent pieces of research I appreciate the most is around opiate use and pot.

Two different studies found that states that legalized marijuana across the board had lower opiate use rates and fewer opiate prescriptions. A few years ago, another paper found 25% fewer opiate-related deaths in states with medical marijuana. I personally think a lot of the hype against opiates is uncool, but they’ve also almost never worked for me.

With all of this information coming out, it’s a shame that the federal government won’t allow a lot of research directly with pot. The NIH is one of the only places that can participate in this research. Their research position hasn’t been changed in nearly half a century despite many advancements, anecdotal evidence, and changes in popular opinion.

It’s frustrating because we know that cannabis can treat chronic pain effectively for some conditions including multiple sclerosis and RA. With a lack of general pain management, especially with the opiate situation, many patients – like me – are left to experiment.

CBD oil, a non-psychoactive cannabinoid found in hemp and marijuana, has been found to have a number of medical benefits on its own. It can lower and help control both inflammation and neuropathic pain. It’s known to help with epilepsy and other seizure-causing disorders. CBD oil can also help a great deal with a variety of anxiety disorders including PTSD.

Whether the THC or CBD portions have been utilized, one thing is clear – people have been using marijuana as medicine for millennia.

It’s important to note that no insurance company covers marijuana because it’s illegal in the US. While patients are saving money on opiates as they have to take fewer if any while using pot, their out-of-pocket costs can be quite high. Marijuana always has to be bought with cash and it’s not like you can get discounts on generic pot, either. That said, a few states including New Mexico allow for reimbursement of medical marijuana costs in workers compensation cases. In Canada, however, insurance companies will begin covering medical marijuana soon!

I hope things will begin to change soon. That means, though, that those of us who advocate for the use of marijuana or CBD oil need to start showing up in the political world. That’s the only way these things are going to change.

While we’re at it, I hope that we forgive marijuana-related crimes like San Francisco as we begin to legalize and normalize pot across the board. To say it’s a shame that people are still in jail for pot-related crimes in fully legal states is a gross understatement.

Recent Advancements in Medicine

Posted on by Grayson

There have been a lot of advancements in medicine, healthcare, and the way we understand our bodies recently. I thought it would be great to take a look at some of those recent breakthroughs.

Last April, a group of researchers found a potential answer for why women experience higher rates of autoimmune diseases – B cells. Well, not just any B cells, but those with transcription factor T-bet. It’s science-heavy, but there was a write-up in Science Daily last May that goes more in-depth. One of the things I find most interesting about this is that T-bet has been shown to be somewhat of a bridge between the innate and adaptive immune systems. That means that, potentially, this could even explain the prevalence of autoinflammatory diseases, too!

A recent study found that being hungry alters how the body perceives – and responds to – pain. This has only been shown in acute pain or what they call longer-term inflammatory pain. That explains how I tend to experience different pain levels based on how much I can eat. In all honesty, I just can’t eat three meals a day. My GI tract doesn’t process things that quickly and I end up in tremendous pain. For me, though, there is a point at which being hungry can trigger my pain levels to increase.

On top of that, chronic pain itself has been found to alter how our immune systems function. This could be giant news on the road to discovering how many chronic health issues can be triggered by a traumatic event. For instance, Morgan Freeman’s fibromyalgia beginning after an intense car accident.

Discrimination has been proven to affect your partners, according to a new study. This was true regardless of the type of discrimination proving what a lot of us already knew – oppression harms everyone touched by it, including partners and loved ones.

Many people dealing with depression and another chronic illness struggle to find effective depression treatment. A new study has found this to be incredibly common. Dr. Madhukar Trivedi suggests that we need to study more about living with comorbid illness and depression in order to figure out better, more effective treatments.

To their point, researchers have been studying how inflammation affects brain cells. Interferon-alpha, or IFN-α, was found to negatively impact the birth of new brain cells while increasing the rate of death of existing cells. Since IFN-α can be used as a treatment for cancer and other illnesses, this study highlights an important issue – and, hopefully, can lead to the development of medications to battle this phenomenon.

Another study recently found that itaconate which is derived from glucose can help shut off macrophages. Since macrophages control a lot of what happens wrongly in autoimmune and autoinflammatory conditions – including potentially being fatal on their own through MAS – this finding could help save lives. This could actually explain why many of us crave sugary things when we’re feeling unwell (and explains much of my life).

Heads up for discussion of child abuse in the below paragraphs

This write-up is, uh, problematic at best. Quotes like this one show why people need sensitivity training around mental health: “People with depression or other mood disorders tend to have trouble distancing themselves from their negative memories. If we can help them remember less or forget those negative memories, then maybe they can reallocate that attention to something more positive in their lives.” That said, I found the results of the study validating – suppressing emotions is linked to a reduction in memory of a traumatic or upsetting event. As someone that still hasn’t processed a lot of things I’ve been through, it was incredibly validating to see that… even if I want to punch the graduate student for giving the quote above. Ironically enough, a study around the same time also found that this covertly happens for survivors of child abuse. They also found that the abuse had a profound effect on the myelin coating nerves, reducing it. This may help explain part of why brains of people living with PTSD and those without show very distinct changes that can be seen by the naked eye.

5 Questions to Ask a New Doctor

Posted on by Grayson
We’ve all been there – you’re sitting at home the night before seeing a new physician and trying to prep. You’re not sure what questions you should ask them and, frankly, you’re more concerned with trying to express your entire medical history in half an hour.
Fear no more! Here are my 5 most important questions.
Do you believe in XYZ diagnosis?
Fibromyalgia has a history of not being believed as a diagnosis. There are, unfortunately, many doctors who still believe this is a fake diagnosis essentially for female hysteria and hypochondria.
If you encounter an older male doctor especially and have fibro, ask this question.
Do you feel comfortable taking on my case?
This is more applicable than the above for most people. Humans are complicated beings. We have multiple medical/health issues, sources of stress, medications, and more. For those of us with rarer conditions, this is a pivotal question to ask.
When I was investigating new rheumatologists this time two years ago, I called an office and asked if they could see if this doctor would be comfortable seeing someone with my conglomeration of fun things. I expected to get a call back from a medical assistant during a lull or maybe the nurse, but doc called me back. She wanted to ask more and we have a pretty long conversation.
She outlined for me right away what she would do, what she would avoid, and more. She was upset that I wasn’t on one of the SJIA-approved medications and wanted to try Kineret/Anakinra right away.
Needless to say, the amount of care she took in speaking with me before I was even her patient led to my decision to see her.
What is your communication style like?
I think it’s important for people to at least be aware of communication preferences or styles that we each may have. This is important in any relationship but can be vital in healthcare.
I mean, this stuff gets into life and death sometimes y’all.
My rheumy and I utilize the electronic medical record system known as MyChart. It’s a widespread EMR system that is fully customizable and happens to be local-ish for us, too. It winds up being like sending an email and is pretty secure. In her office, I usually get same-day responses or (rarely) may have to wait until the next day.
In other offices, it can take up to a week for a response.
This is definitely a part of why it’s important to see what your doc wants to know in what way(s).
When XYZ happens, do you prefer I contact you or another physician?
This is one that I frankly need to ask all my current healthcare peeps.
I see my rheumy and related healthcare providers most often. This means that I sometimes am not sure who I should alert about certain things. Sure, things like sinus infections, etc, usually wind up warranting a trip to urgent care since I’m on immunosuppressants. Injuries do, too, due to their severity, like when I split open my foot.
But what about a new symptom that could be a rheumy thing? Do I go GP first, even though she’s really inaccessible as far as schedule?
Some people really rely on their specialists due to the crummy quality of their primary care selection. I once had an old PCP tell me 1) this abscess I clearly had was a pimple, and, 2) to take my biologic as scheduled.
He also laughed literally in my face during that, so he was definitely fired.
The point is, we have to start asking this. It’s just as important as who to contact first in an emergency.
Are my medications ones that you feel comfortable prescribing?
This is one that I wish I had asked before seeing my new rheumy. The non-steroidal anti-inflammatory (NSAID) and Lyrica that I take several times daily aren’t things doc feels awesome about. That said, she knows I might not be alive without them, so she prescribes them but always with a goal of lowering them eventually.
The supply muscle relaxers I had ‘just in case’ is currently dwindling and she’s not down with prescribing those like my last doc was.
This is something that I will have to ask my primary care doctor about instead. I believe that she would be down with that, especially if I were to tell her how long this last bottle has really lasted.
What questions do you ask new healthcare peeps? Are there any you’ve learned to ask the hard way?

 

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?

 

Medical Monday: Communicating with HCPs

Posted on by Grayson

Communicating with people who work in healthcare can be tricky. If, like me, you had little exposure to the healthcare world growing up, it can be even harder to figure out and discuss what is actually the most pertinent information.

As I’ve talked about before, making sure that there is an understanding between patient/family and provider on communication methods and the like is crucial to patient success.

When you first mean with your provider and their team, one of the first questions/issues that should be discussed is communication standards and preferences. This includes topics like:

  • Do either of you have a preference on utilizing phone calls versus MyChart to communicate non-urgent medical issues, prescription issues, and/or questions?
  • Are there any access issues for either of you with some forms of communication (i.e., no computer/internet access, hearing issues, etc)?
  • How often do you expect to communicate – only for urgent issues, every month, etc?
  • What is the best way to reach each other in the most urgent of circumstances?

Making sure that you communicate any changes – and that your physician does as well – will help keep things running smoothly.

Make sure to always ask questions and take some time to think on and/or research medication or treatment decisions.

Try to separate emotion from the conversation at hand. This will definitely be more difficult in certain situations than in others, but is important at the very least when communicating symptoms.

Let the physician know what, in your mind, the series of events or issues was that led you to seeing them. They often times don’t know fully what the complaint may have been when the appointment was set up.

Communication heavily influences our health and our willingness to get help from our care providers. It’s up to us to make sure that we’ve set ourselves up with physicians who are like-minded and can develop a good relationship with us, and vice versa.

Sources:

 http://www.heart.org/HEARTORG/Caregiver/ReachOut/CommunicatingwithHealthcareProfessionals/Communicating-with-Healthcare-Professionals_UCM_301843_Article.jsp#

 http://healthcarecomm.org/about-us/impact-of-communication-in-healthcare/

Medical Mondays: coinsurance, copay, and other confusing insurance technobabble

Posted on by Grayson

With the new insurance year almost in full swing, let’s review some important insurance terminology.

Coinsurance and copayment – what in the world is the difference?

Okay, so a copayment is a portion of money you have to pay your doctors, etc, for services rendered or to your pharmacy for a prescription. Copays are generally a fixed rate – for example, Lyrica through my current pharmacy is $20 a month.

Copays also usually go away if you hit the out-of-pocket maximum for your plan. If you had an MRI in early January last year like me, that means you hit the maximum pretty quick and got to enjoy appointments without having to pay much in the rest of the year.

That came in handy with bronchitis and other BS, I tell you what

Bear with me, because coinsurance is not so straightforward.

The coinsurance is an extra amount you owe, which is generally the balance of your total medical bill once your insurance pays their part – regardless of whether or not you paid a copayment.

And then, there’s your deductible… which is basically the amount of money you have to pay before insurance will cover anything.

Copayments don’t count towards that amount because that would assume that the insurance is picking up any part of the tab.

If you’re chronically ill like me and end up having to see various providers a lot, you’ll likely want an insurance plan with a lower deductible because it’ll save you money upfront.

Sources:

 https://static.ehealthinsurance.com/resource-center/wp-content/uploads/what-is-coinsurance-1024×512.png

 http://www.diffen.com/difference/Coinsurance_vs_Copay

Medical Monday: Medication Tips

Posted on by Grayson

Before we dive into more medication tips, make sure you’ve entered this contest for a pill organizer (it ends tomorrow!) and have checked out the tips I have for managing your medications.

Some of the medications that we have to take aren’t pleasant, from infusions to shots to nasty tasting pills.

I’m looking at you, prednisone.

Here are some of the tips I’ve acquired over the years regarding medications.

1. Don’t try to take all the pills at once.

Oh, it seems like fun when you get it right, throwing the eight pills you take in the morning in your mouth in one go.

When it doesn’t work, though, you can actually choke.

Personal experience.

Please don’t.

2. Do consider taking pills with not water.

Some pills are easy to get stuck in our mouths. Drinking something slightly more viscous than water like moo juice can really help.

3. Prednisone should basically be taken with yogurt.

I’ve been on pred enough to know how nasty it tastes when it gets stuck in your mouth or throat, which it almost always seems to do.

Taking prednisone pills inside yogurt will help eliminate that while giving enough viscosity that the pills don’t get stuck.

4. Ice your tumtum while letting a refrigerated injection warm up…

So hey, let’s talk biologics.

When they’re cold, it hurts like all get out to inject them, so most docs recommend letting the injection sit out around 15 minutes to warm up.

This gives you perfect timing to gently ice the injection spot beforehand which will help lower the pain from the needle going in.

5. And ice right after you inject.

Injections hurt. Your body is already pretty full of body stuff, so piercing the skin and adding more goop isn’t always comfortable.

If you ice for a few minutes post-injection, it can help with any bruising AND pain.

6. Just rest during infusions.

Many have great ideas for being productive during infusions, bringing work or homework with them.

A lot of that anticipated productivity goes out the window, though.

Infusions suck. They make you tired, even if they’re just saline.

Please just rest. Bring a blanket and your laptop so you can watch Netflix and chill.

7. Take a deep breath.

It can be really easy, especially when starting a new medication, to be very worried and anxious. While it’s important to watch for potential side effects, it’s also important to try not to freak out too much.

Yes, I do realize the hypocrisy in my saying that.

I thought Enbrel or Humira were going to turn me into a hamster… and there’s a video on my youtube channel of me basically having a panic attack pre- and post-injection.

Try to do some meditation beforehand.

Take a shower.

Do whatever calms you, and remember that you’re not alone.

 

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?