To The Park Ranger Who Questioned My Disability

I love camping. It one of my favorite things to do and I wasn’t about to let my stupid flesh prison keep me from doing it. So I organized a camping trip with 6 friends.

We went to Saddlehorn Campground, just a little bit out from Grandjunction, CO. I chose it because it had cemented paths and disability spots. It was absolutely beautiful as well.

We got there Friday late afternoon. Within 5 minutes getting there a man rode up on his bike.

“Why are you parked in a disability spot,” he accusatorily asked me (my official placard hanging in the window).

In immense pain from the 4-hour drive, I responded: “because I’m f**king disabled.”

He stood around and dumbly added, “but I’ve seen all y’all walking around.”

At this point I wasn’t alone in my anger, my friends chimed in. “Go away” “mind your own business” they yelled while I yelled, “just because I can walk tiny distances doesn’t mean I’m not disabled!”

He angrily, and obviously not convinced, jumped on his bike and rode off. I tried to not let it bother me, but it did. I was already gnawing at me when the park ranger came to our campsite.

“I need to see whatever proves you are disabled.” Obviously, my new friend had tattled on me. While she was saying this my disability placard hung visibly from the rearview mirror of the car.

My partner stood up and ushered her to look at the placard- literally right beside her. She walked away huffily as well. No apology for her hugely inappropriate behavior. Nothing.

I chose Saddlehorn for its disability friendly campsites and was harassed instead of finally easily able to enjoy camping. However, apparently, you have to be visibly disabled to not be harassed by other campers and staff.

Newsflash Saddlehorn: not all disabilities are visible. Not everyone who needs those spaces uses a wheelchair 100% of the time. Disability placards exist and aren’t easy to get without an actual condition that you need it for!

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9 Common POTS Myths

There are a lot of common misconceptions about POTS. There are ones I get from doctors, nurses, family, friends, and even other POTS patients. Remember that most of our POTS symptoms are different and that the same thing doesn’t work for everyone!

1. POTS Is NOT Anxiety
I don’t care how much POTS looks like anxiety- it isn’t. The increased heart rate, palpitations, and shortness of breath in POTS are caused by the autonomic nervous system. Medicines for anxiety and medicines for POTS do not work the same and do not necessarily alleviate POTS symptoms.

Anxiety can happen as a result of POTS or alongside POTS but I cannot stress enough that they are not the same thing. Strange scary symptoms can make patients nervous and the life change of living with a chronic illness is enough to make anyone anxious, but the underlying condition is not caused by anxiety.

2. POTS Symptoms Disappear When You Lay Down
I have had multiple doctors ask why I don’t just lay down to fix my symptoms. Let’s get this straight- POTS symptoms are exacerbated by standing but do not disappear when I lay down.

Many people with POTS feel terrible laying down as well. Unfortunately, POTS symptoms can reach you at any angle. Just last week my tachycardia was 130 bpm while laying down and relaxing for four hours. The chest pain and brain fog did not go away the entire time. So while standing makes things worse, lying is not a magic cure-all for our symptoms.

I have talked to very few people who feel 100% better once horizontal but it is not the average POTS patient.

3. Exercise Will Cure POTS
Some people with POTS have had this experience and I am thrilled for them. However, for many of us exercise is not a cure-all. I hear on support groups POTS patients who have been helped with exercise be judgemental and condescending towards those who have not been helped. Additionally, friends and family can claim you aren’t trying hard enough if exercise does not cure you. Please stop people!

Exercise helps POTS but for people like me it is not a cure. I have tried swimming, biking, rowing, and walking daily for months at a time. Exercise helped my symptoms but my POTS is still severe and unrelenting.

Just because you are able to exercise does not mean you get to judge people who can’t (or are not having the same results. Associated conditions that happen together with POTS such as Ehler’s Danlos and neuropathy can make exercise extremely painful and difficult.

 

edsexercise.gif
Trying to work out with EDS is a lot like this.

 

4. Most People Grows Out Of POTS
I was diagnosed with POTS at 18 and being between a teen and adult made things complicated. Pediatricians claim that many people who get POTS in their teens outgrow POTS; that doesn’t happen as often in adults.

Every doctor I saw that first year after my diagnosis told me I would grow out of POTS. It is 7 years later and my POTS is worse than ever. I understand doctors wanting to give their patients hope but that hope kept me from coping with a major life change. Instead of coming to terms with having a chronic illness I only thought of POTS as temporary.

This negative experience is not unique to me. A lot of people who are diagnosed with POTS in their teens will never grow out of it. A lot of this has to do with associated conditions; for example, people with Ehler’s Danlos rarely grow out of POTS. Telling all teens POTS is temporary, when many cases are not, is not helping them cope with their illness.

5. POTS Is No Big Deal
POTS can be an annoyance or it can be severely debilitating. This variance is part of why POTS is so hard to understand. Often people who have heard of POTS have a friend mildly affected and cannot understand more severe cases.

“Claire never cancelled this much on me and she has POTS too. You obviously are just making excuses again.”

 

Don’t be confused by people with less severe cases; POTS is often far more than an inconvenience. Experts are clear. POTS can be serious and hugely lower patient’s quality of life.

flake
Somehow being too sick to go out makes me a flake and is grounds to yell at me. I did not choose this.

Comparisons in the diminished quality of life in POTS have been described as equal to congestive heart failure, chronic obstructive pulmonary disease, and end stage kidney failure patients on dialysis. Some people with POTS are absolutely bedridden and unable to care for themselves. About two-thirds of POTS patients cannot work full-time and 98% of POTS patients cannot socialize as much as they would like.

POTS can be a big deal.

6. POTS Has Nothing To Do With Pain
POTS is not commonly associated with pain, but often causes a lot of patients pain. Chest pain is exceptionally common with POTS and is sometimes severe (I have had POTS chest pain hurt as much as a pulmonary embolism). POTS is also associated with migraines, neuropathic pain, and joint pain.

Many conditions associated with POTS cause pain as well. Ehler’s Danlos causes an extraordinary amount of pain and autoimmune conditions may cause pain as well.

7. Lifestyle Changes Can Cure Everyone
There are some naive people who believe that no POTS is so severe that it needs medication. I recognize why lifestyle changes should be considered first. For many POTS cases more salt, water, and exercise are all that is needed to control symptoms. However, there are some people who still cannot function with these changes.

No matter how much I exercise, drink water, wear compression, tilt my bed, and eat salt I still faint without a beta blocker. I still do all those things but lifestyle changes alone aren’t always enough in so many cases.

8. Blood Pressure Changes Have To Be Involved For Diagnoses
The diagnostic criteria for POTS are about pulse, not blood pressure. While some changes in blood pressure may occur during a tilt table test or upon standing POTS is not the same as orthostatic hypotension. Hyperadrenergic POTS can affect blood pressure as well, but does not have to be present for diagnosis.

9. POTS is Not Rare
1-3 million Americans have POTS and about 1% of teens have POTS. It is more common than both ALS and Parkinson’s Disease, but awareness is a huge problem. As a result, it doesn’t seem like there are that many of us or that POTS is worth researching. Awareness will help fix this.

For how common POTS is there is some exceptionally bad information out there. As a result, people are getting the wrong ideas about POTS. Dealing with misconceptions constantly becomes frustrating. What misconception are you sick of correcting?

The Diagnosis Dilemma

POTS affects between 500,000 and 1,000,00 in the USA alone, according to Dysautonomia International, but isn’t very well known in the medical community. It is more common than Parkinson’s and Multiple Sclerosis- so why has no one heard of it? Some of this is due to that POTS was just recently given the name POTS in 1993. Lack of research and understanding is the largest problem. Research is finally starting to be done, but a lot more needs to happen. Often Veterinarian students will learn about Dysautonomia and medical students hardly gloss over it. A lot of POTS patients many different doctors before they diagnosed. Throughout this process we begin to lose support from your loved ones, support from the medical community, and are told our symptoms are all in my head.

My Experience

My personal experience with getting diagnosed with POTS was an incredibly lucky one. While working as a receptionist at a hotel I fainted after I had been standing for a few hours. They took me to the hospital to make sure I didn’t have another Pulmonary Embolism and (of course) didn’t figure out what the cause was. They sent me home with a referral for a cardiologist. The cardiologist was useless but did do one great thing: he sent me for a tilt table test.

My first tilt table test was ridiculous. When I told them I was going to faint they ignored me. My heart rate went from up over 60 beats per minute and I passed out. Afterwards, I asked them what that meant and they told me it was normal.

After waking up from fainting at the sight of my wife giving birth, MRW the doctors stare at me - Imgur

If I had listened to my cardiologist and the technician it would have taken much longer to get a diagnosis. Not everyone faints from POTS, but it was lucky I did because I was able to figure out what I had as a result. I googled “fainting after standing” as one of the hundreds of things I looked into. Between that and looking up “increase in heart rate upon standing” I was able to find that I had POTS. I found a new cardiologist, who wasn’t much better, who was able to definitively diagnose me with POTS. My hyperPOTS diagnosis took a bit longer, but that was a few years later at Mayo Clinic.

I did have trouble with getting diagnosed with my gallbladder problems and Pseudotumor cerebri getting diagnosed. Any rare or complicated condition has the potential for diagnosis these problems.

Just How Long Are We Talking?

To best understand what POTS patients go through in obtaining diagnosis we must look at the length of time and the number of doctors seen before diagnosis. Most POTS patients see 3-5 doctors, but there a few who have had to see 36 or more! That is about a day and a half of doctor’s appointments total; which means a day and a half of doctors telling you nothing is wrong and it is in your head. The amount of money for 36 doctors and a lot of testings is incredibly expensive! It is also emotionally draining.

numberofdocs

Source: Data from the patient survey on POTS this wonderful website it doing here.

As for how many years it takes to get diagnosed, for the vast majority of POTS patients it takes over five years! For some patients, it takes as long as 20 years. Twenty years of medical tests, doctors visits, and feeling terrible with no answers.

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Based on a Facebook poll of 76 POTS patients.

The Emotional Toll

Often when we first get sick people are very understanding and supportive. They want to help and there is a lot of sympathy. However, after months with no answers that sympathy and understanding goes away. Parents demand you clean and do chores, after all doctors found nothing wrong with you. Friends get upset when you have to cancel due to your symptoms. People stop asking how you are and that support turns quickly into judgement. It is one of the most alienating things I have ever been through.

If your loved ones not being supportive isn’t enough, the medical community begins to “shun” you. Doctors are terrible at saying “I don’t know”. Instead, they blame the patient and insist it is all in their heads. Here is a notable list of things doctors may say:

1. “It is just anxiety” Or insist it is depression, hypochondria, or another mental health condition.

2. “You are doing this yourself.” They assume it is Munchhausen’s or Munchhausen’s by proxy.

3. “You need to stop doing drugs.”

4. “You are making things up to get drugs.”

5. “You just need more exercise.” Or they tell you to be more active, go back to work, get out more.

6. “You are making up all this to get attention.” Oh ya, I love how much attention I get for POTS.Most of it is negative! I hate being that sick girl- who would want this?

7. “That is normal.” Fainting is normal? POTS symptoms aren’t normal and are a huge threat to the quality of life!

MRW i am about to fart but it really is a shart and i stop it just in time - Imgur

Feeling terrible and hearing these things is incredibly draining. After hearing it is all in your head you begin to wonder if they are telling the truth. Friends and faily may even agree with the doctors and begin to say hurtful things when all you need is their support.

How Do We Fix This?

Advocate and Educate! It can be incredibly frustrating to have to educate a doctor, but it is the only way things are going to get better. The more doctors know about POTS, the fewer people will have to endure misdiagnosis. Those of us with a diagnosis need to help those who haven’t yet.

Here is a pamphlet from Dysautonomia International on Dysautonomia to give to any doctor who needs to do some learning. This is a fact sheet on POTS. This is a POTS overview. Go forth and educate!

And Then She Told Me I Have Cancer

Having Cancer is News to Me

Last week I was diagnosed with cancer by an ultrasound technician before the test even began. I sat down and she sais, “so we are looking at the state of your thyroid cancer.” As far as I knew I was just having a thyroid nodule checked. I was nervous, but her comment terrified me. I confirmed with her that the order did say I had cancer. Did the doctors know something I don’t?

I then proceeded to ask the name of this doctor who said I had cancer. Somehow, the order was from a doctor I’ve never even seen. A doctor I hadn’t even been to yet said I had cancer. My primary doctor is the one who scheduled the test so I was very confused. Maybe this new doctor didn’t care enough to enter the correct code for the technician. I can’t even imagine what happened to make that mistake. As a result, my weekend was stressful. I had to wait four agonizing days before the doctor finally called me back.

At least for now, they have determined that the tumor doesn’t need immediate attention. I don’t understand because it has doubled in size in the past year. I also have mysterious thyroid blood test results. For some reason, I don’t feel relieved yet. Maybe it is taking a while to sink in because I was trying to get used to the idea that I do have cancer in case the ultrasound technician was correct.

I am confused and frustrated over this situation. Patients shouldn’t have to deal with a fake cancer diagnosis. Telling someone they have cancer should never come so lightly! And you definitely shouldn’t have to hear it from an ultrasound technician.

I try to be understanding of people just making mistakes. However, these sort of mistakes happen all the time to me. I’ve been misdiagnosed a few dozen times. In fact, this isn’t even my first time being told I have cancer. The first time I was told I had cancer was by a Gastroenterologist. He diagnosed me without even doing tests. As someone who struggled to get my diagnosis, I am usually all for getting diagnosed. But only is if it the correct one! Incorrect diagnoses are stressful and harmful to patients.

The first time I was misdiagnosed with cancer, I was referred me to an oncologist and they did many painful tests and put me through a lot of stress before determining I didn’t actually have cancer. For months, I thought I had cancer because my doctor didn’t care enough to get all the facts. That stress takes a toll on your mental state.

When you're really not okay but you don't want people to worry... - Imgur (1)

Too Many Rules

I also had bronchitis/pleurisy last week. I was coughing, hadn’t slept in three days, and was in terrible pain. It is now taking three weeks to get into a Pain Specialist for an appointment. So I called my doctor. She called me in an antibiotic and cough syrup with codeine to the pharmacy to help me sleep. I was excited to finally get sleep and feel a little better.

Cough syrup with codeine is monitored closely under the law. A hard copy of the prescription is required to refill it. So obviously the fax from my doctor didn’t work. I called my doctor at 4:30 PM and they were already closed! So just because of ridiculous rules and regulations I had four pain filled and sleepless nights in a row instead of just three miserable nights.

I understand that many of the rules and regulations in the medical system exist for a reason. However, people who are chronically ill have to deal with all the inconveniences created by rules daily. While I am sure that requiring hard copies may lessen narcotic abuse, but it makes it so difficult for chronically ill patients to get the medication they need. When these problems arise, doctor’s offices take hours if not days to get back to you. The rules and regulations may not stop, but how medical professionals can change to make their patient’s lives easier.

When problems do arise, doctor’s offices take hours, if not days, to get back to you. The rules and regulations may not stop, but medical professionals can change to make their patient’s lives easier.

I'm overwhelmed. - Imgur

We Need Change

The medical profession exists to help people. However, when things go wrong the medical system can ruin your day, week, or life. Even small mistakes, like the failure in communication between professionals I experienced, can really make the patient’s experience worse. Dealing with an illness is already a trying time and incorrect information can affect people’s quality of life. Shouldn’t medical professionals be working to make their patient’s quality of life?

It needs to be easier to contact doctors for questions; it needs to be easier to refill a prescription. There has to be a better way for medical professionals to communicate with each other.

Most importantly, we need to value medical professionals who do care about their patients. There is so much focus is on competition and learning in medical school that by the time those students are doctors, they have a hard time seeing them as humans. When intelligence, competition, and apathy are encouraged in medical students is it really any surprise that doctors don’t value their patient’s quality of life.

My largest complaint with the medical profession is that I am treated like a number. I have bounced around hundreds of doctors and am constantly bombarded with tests, but rarely does a doctor treat me like a human being. Treating patients like humans instead of numbers will solve many problems the medical system has. I know a doctor who cared about patients as people wouldn’t accidentally diagnose someone with cancer.

I feel overwhelmed with emotions and I don't know how to handle them. - Imgur

9 Ways to Be Supportive When You Don’t Understand

There are many experiences common to every human. Most of us will go through these, so we can easily relate and empathize. Nearly everyone is affected by the common cold. Therefore, when someone says they have a cold it is easier be understanding and supportive.  Memories of soup, towers of tissues, and feeling miserable immediately come to mind. We know how to support and help each other through a cold because we can remember what we needed. But what happens when you have no idea what a loved one is going through? How do you support them?

1. Realize you don’t have to understand to lend support. As humans we all go through hard times. Two friends I used to babysit, Julia and Evan, were young friends who both supported each other through an incredibly trying year. Julia and Evan show that humans, including children, don’t have to go through the same experiences to support each other. For Julia, the worst experience of her young life has been the loss of her mother. For Evan, the death of his beloved dog has been the most difficult time of his life thus far. So how did Evan support, empathize, or even begin to understand Julia? It is obvious that they couldn’t entirely relate to each other’s experience. However, this doesn’t mean that they can’t support each other. Both children went through an experience that was incredibly difficult for them. While Julia’s mother’s death had a more profound effect on her life, both children felt sincere grief. Sorrow and struggle are real and in the moment. The cause of grief didn’t change the despair either child felt. Because both children went through those hard experiences and felt grief, they can better relate to each other. Even though the causes and degrees of these feelings were different, both Julia and Evan supported each other through their grief.

As humans we all go through hard times. Two friends I used to babysit, Julia and Evan, were young friends who both supported each other through an incredibly trying year. Julia and Evan show that humans, including children, don’t have to go through the same experiences to support each other. For Julia, the worst experience of her young life has been the loss of her mother. For Evan, the death of his beloved dog has been the most difficult time of his life thus far. So how did Evan support, empathize, or even begin to understand Julia? It is obvious that they couldn’t entirely relate to each other’s experience. However, this doesn’t mean that they can’t support each other. Both children went through an experience that was incredibly difficult for them. While Julia’s mother’s death had a more profound effect on her life, both children felt sincere grief. Sorrow and struggle are real and in the moment. The cause of grief didn’t change the despair either child felt. Because both children went through those hard experiences and felt grief, they can better relate to each other. Even though the causes and degrees of these feelings were different, both Julia and Evan supported each other through their grief.

MRW when my friend's GF starts saying bad things about me and my friend says You never talk to him like that or we're done - Imgur

2. Don’t compare experiences, but do relate to feelings. Whatever your loved one is going through, you have at least some experience you can look at and relate it to. We have all felt frustration, despair, hatred, and pain. For example, if you want to relate to someone who is chronically ill look at what you felt when you were sick. You likely felt pain and frustration, just to a different degree. Therefore, you have the tools you need to empathize with them. Just think, how would those feelings change when sick much longer? What else would you feel? What would you need in terms of support?

Today I got my first full paycheck. After more than a year of just barely getting by due to illness. - Imgur

While searching for common feelings remember to never compare experiences. You would never say to someone who just lost their mom “I understand what you’re going through because I lost my family dog last year.” Instead, you want to consider what feelings that loss stirred in you and what support you may have wanted from others. Then you can adjust your actions accordingly and support them successfully.

While searching for common feelings remember to never compare experiences. You would never say to someone who just lost their mom “I understand what you’re going through because I lost my family dog last year.” Instead, you want to consider what feelings that loss stirred in you and what support you may have wanted from others. Then you can adjust your actions accordingly and support them successfully.

3. Seek to understand and learn. When your related feelings and experiences just aren’t enough to understand what someone is going through, seek understanding elsewhere. Even if your loved one may not want to walk in detail about what they are going through, the internet is a great resource to find people who will give you insight. You can just look up ”

When your related feelings and experiences just aren’t enough to understand what someone is going through, seek understanding elsewhere. Even if your loved one may not want to walk in detail about what they are going through, the internet is a great resource to find people who will give you insight. You can just look up “what it is like to lose a parent” or what it is like to live with a chronic illness“. Reading these will help you to understand what your loved one is going through. If you still have questions, approaching your loved one and saying “I don’t understand what you are going through but I want to support you” can be enough! This gives your loved one an opportunity to explain what they are going through or, if they do not wish to talk, they will at least know you really care and feel your support.

4. Never judge. The fastest way to make someone feel unsupported is to judge them. Never judge how someone deals with something you have never dealt with. Even if you have dealt with it, avoiding being judgmental is a great practice. For example, you should not say “it has been six months, shouldn’t you be getting back to normal?” Instead offer support and say, “I know these past six months have been hard on you; is there anything you would like to talk about?” Try to understand and support first, judge later (or never).

5. Offer more than your prayers. Prayer is the most common support offered to loved ones going through a hard time. Letting someone know you are thinking about them is great, but what are you really doing for them? Even if you believe in the power of prayer, you telling them you are praying does little for them as far as feeling supported. Letting them know that you are there to listen, cooking them a meal, or cleaning their place is much better. If you want to let someone know you are there for them, do something! Actions speak louder than words. These helping actions will lead to your loved one feeling much more supported than they would with a prayer.

The power of prayer! - Imgur

6. Reach out. Don’t assume they will ask for support. Asking for help is not my strong suit. Asking for help isn’t easy for a lot of people. When people are going through a hard time it may be even more difficult. Vague offers for help with “anything you need” begin to feel empty and contrived. So if you really want to help and support someone ask, specifically, what you can do. Reach out to them whenever you think of them or wonder if they need anything. Even if they don’t need help, they will feel much more supported.

7. Suggest specific ways in which you may help. Suggesting specific ways in which you may help will make your loved one feel even more supported. Even if you aren’t aware of exactly what they need, offering concrete ways in which you want to help shows your support. Suggesting tasks also gives your loved one an idea of what you are willing to do and gives them an idea of what they can ask for comfortably. When I need help I ask people who have offered some specific help in the past. I assume people who say “if you ever need anything just call,” are simply being polite.

8. Listen and empathize; hold the advice. If you have no idea about what going through a situation entails, please don’t give advice on it. I can’t tell you how many people have given me unwarranted medical advice because I have a chronic illness. It isn’t being supportive. When you give advice on something you know nothing about you minimize what your loved one is going through. I have spent the past six years bouncing around the medical system, confusing doctors. My complicated medical problems are not going to be resolved by an ignorant jerk with no medical background who is convinced I just need to cut out gluten.

MRW my ex shows empathy. - Imgur

This of course only applies when you aren’t asked for advice. If you have been asked, give your advice with as little judgment as possible.

9. Don’t pull away just because you don’t understand. Just because it is hard to be there and support someone through a hard time doesn’t mean you should give up. Even without similar experiences you can enrich their lives through supporting them through this hard time. Seek understanding even if it isn’t the easiest thing. They need your support especially now. Even if someone doesn’t ask explicitly for your help and support, they may really need it.

When it comes to depression and chronic illness - Imgur

It is possible to support someone through something you don’t understand. Ask questions and try to understand what they are going through the best way you can. Offer specific suggestions for how to help them, and don’t offer unwarranted advice. Just listen and love. Good luck!

Cake is Infuriating: Chronic Pain in the Movies

For those of you who don’t know what I’m talking about, Cake is a movie with a Jennifer Anniston about a woman in chronic pain. When my partner first downloaded the film I was really excited to watch it. Chronic pain is a real struggle for so many people. Our story will finally be told!

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I got my hopes up, but Cake was absolutely infuriating. They had such a great opportunity to share our story and fell entirely short. Not only is Cake a terrible representation of what it is like to live with chronic pain, the film seems to go out of its way to make us look bad. This is a common issue. People with chronic pain are commonly treated like criminals for being in pain. Our entire struggle is diminished as “drug seeking” and society basically shames us for the pain we have no control over. Cake is making these misconceptions worse.

Chronic pain does not equal addiction!

Hades raging. AWESOME gif - Imgur

Claire, the main character of the film, falls short in so many ways. Claire is an abrasive addict. She is obviously addicted to opiates. She likely is actually in severe pain, but she is not responding in a healthy manner. There are people who take opiates for chronic pain and get help the correct way. Claire does not. She lies to her doctor to get medication. She drives to Mexico to get medication. She steals from her dead acquaintance to get medication. She drinks in excess while on medication. She takes an incorrect dose of her medication. She even overdoses as a response to stress!

For these reasons, Claire is an ideal character to represent addiction. The problem is that, for many, she represents someone with chronic pain. She fails us.

Pain isn’t Passing

In Cake, Claire’s pain begins as a part of a car accident in which she lost her son. Claire is in physical rehabilitation to make improvements over her condition. We are shown an aqua therapy session in which Claire gives up quickly due to pain and the therapist complains about her lack of improvement. Eventually, when Claire begins to try harder; things begin to magically go her way. This upsets me greatly. The most frustrating misunderstandings people with chronic pain endure are perpetuated by this horrible movie.

For example, chronic pain is not on a timer. Chronic pain isn’t usually pain from an accident that should continue to improve in time. For a lot of us our problems will get worse with age or stay the same. That “you aren’t better yet?” mentality is so frustrating! Explaining that this is the state of your health and it isn’t going away anytime soon is incredibly taxing.

When my RA asks me if my water bottle is full of alcohol - Imgur

Hard Work… Impossible Work

You just need to “work harder and you will be better!” This mentality, encouraged by Cake, is also harming those of us with chronic pain. In my condition, (Ehler’s Danlos III) hard work and physical therapy are often required to heal from injuries. However, no amount of determination or hard work is ever going to magically fix the collagen in my joints. I will continue to have problems. My control over my recovery is limited by my underlying condition. Just like many other chronic pain sufferers.

At one point in the movie Claire decides she is done with drugs. She even dramatically tears out her IV. I seriously can’t roll my eyes at this enough. In Cake, Claire’s determination was enough to stop the meds and deal with her pain drug-free! This is far from reality.

Liz Lemon Epic Eye-roll - Imgur

For me, pain meds are the last thing I try. If I am on pain medication for an extended time it is because I would not be able to function, survive, and/or live in the amount of pain I am in off of medication. There are too many side effects for me to be on them unless it’s a necessity. Opiates aren’t some nice crutch you start and stop on a whim!

You would never praise a diabetic for suddenly forgoing insulin. If Claire needed the amount of opiates she was consuming, suddenly stopping is unrealistic. Stopping opiates suddenly after an extended amount of time is simply a bad idea. That should have been a decision she made with her doctor. Cake continues this belief that opiates are only for those who aren’t mentally strong enough to handle pain. Taking medication for severe chronic pain is not a sign of weakness. Stop stigmatizing treatment for chronic pain!

Chronic Pain and Suicide

The single thing that I appreciated was that Cake approached topics of depression and suicide ideation. Physical pain can have a huge impact on mental health. It is under-addressed that a lot of people in chronic, severe pain think about suicide and self-harm. It is actually quite natural for these thoughts to come up in chronic pain patients.

What about it wouldn’t be natural? If you were in pain constantly would you too not wonder about escape? Patients who feel this way should be offered support and therapy; under no circumstances should someone in severe long-term pain be shamed. Whether patients disclose depression, suicide ideation, worries of dependency, or ask for a pain medicine there is no reason they should ever be treated as a criminal. Any open and honest communication should be encouraged.

muchpain

If the pain is severe enough that suicidal thoughts are occurring then coping mechanisms need to be enhanced. Often chronic pain patients do not ask for help with these coping strategies despite medical professionals being equipped to help. Both the act of admitting depression or suicidal thoughts as well as requesting additional pain relief are extremely stigmatized. Therefore, patients aren’t talking to their doctor and getting the help they need before suicide becomes the only viable option left. This is a topic that needs to be talked about more and I appreciate Cake addressing it. Addressing depression and suicide ideation really is the only thing that movie did correctly!

I also believe that it is necessary for patients to be able to be honest about worries of dependency, tolerance, and addiction to opiates. By criminalizing opiate addiction, we have made it so that these patients, like Claire, cannot get the help they need. If Claire wasn’t worried about being judged or treated like a criminal she may have been able to get the treatment she needed for her opiate addiction.

Cake is Just Wrong

This movie genuinely had me in tears, and definitely not because it was a truly moving. So many people who were in my life have treated me like I’m Claire. They treated me like a drug addict for being in pain. This is how a big part of the world sees us. It already is terrible to be in pain every waking moment. Those around you seeing you in pain and still treating you like a drug addict due to the stigma behind opiates is even worse. I know for a fact that a portion of my family would rather see me screaming, crying, and writhing on the floor in pain rather than have me take opiates. For me, that is the most heartbreaking part.

So to Cake with all its misconceptions: Not all of us are in pain due to an accident. Not all of us are in pain because we aren’t working hard enough at rehabilitation. Not all of us will get any better. Some of us will get worse. It will not be because we weren’t trying hard enough.

We are nothing like Claire. We want to get better. We want it more than anything. We hate taking the drugs. We avoid them when we can. We don’t lie or manipulate doctors. We are not weak because we take medication. We are strong from the pain we have fought all these years.

Most importantly, we are in pain and every day is a battle. So give us your support, not your judgement.

History of POTS

Postural Orthostatic Tachycardia Syndrome is a type of dysautonomia. POTS has just recently begun to be recognized within the medical community. Patients with POTS commonly go undiagnosed for a year or more. Some doctors don’t recognize POTS as a genuine condition and claim it “isn’t real”; even more doctors simply do not understand. POTS just recently gained its name so it is just beginning to show up in television and pop culture.

Names

In 1993 researchers led by Dr. Philip Low at the Mayo Clinic coined the term “Postural Orthostatic Tachycardia Syndrome”. POTS was previously referred to as Postural Tachycardia Syndrome in 1982 by Philip Low and Ronald Schondorf at Mayo Clinic.

During the American Civil War Jacob Mendes Da Costa described a condition which may have been what we now call POTS. Da Costa called the condition “irritable heart”. Because Da Costa was the first one to describe the condition it is also described as Da Costa’s Syndrome. Da Costa’s syndrome is unique in that there are profound symptoms, but physiological abnormalities are usually absent. Because of this description many people assume Da Costa was describing a form of anxiety, but some of his patients may have actually had POTS.

Da Costa’s syndrome is also called cardiac neurosis, chronic asthenia, primary neurasthenia, effort syndrome[2][3], and neurocirculatory asthenia[4]. Da Costa described the symptoms of “irritable heart” to include palpitations, shortness of breath, chest pain, and fatigue upon exertion [5]. POTS is commonly misdiagnosed as an anxiety disorder. I think it is entirely possible that this “exertion sickness” was, at least in some cases, indeed POTS.

I have recently heard POTS called Astronaut Syndrome. When astronauts return to gravity from a lower-gravity state they may experience POTS-like symptoms. This term has not gained traction. I have also heard POTS called Grinch Syndrome because in some cases POTS is due to deconditioning and the heart is too small. Thankfully, this term has also not gained traction because it is simply inaccurate for most POTS patients.

Popular Culture

POTS doesn’t have a huge place in popular culture. It has been mentioned in House, MD. In the episode The Choice, POTS is suggested as a possible condition. However, in the end the patient does not have POTS but rather Chiari Malformation. Chiari malformation is seen in a number of POTS patients. In House, the orthostatic element of POTS (which not all patients have) is the focus of discussion.[6]

VSDucP0

POTS has also been addressed in Mystery Diagnosis. Marissa Irwin was featured in an episode of Mystery Diagnosis. She has POTS, Ehler’s Danlos, and Arnold Chiari Malformation. Patients have expressed frustration with how Mystery Diagnosis frames these cases. While POTS and EDS get exposure, the show likes to wrap the story into a pretty bow. This ignores the fact that these are chronic incurable conditions. Marissa is now a model and has been on the cover of Seventeen and Bridal Guide.
MarissaIrwin2

Some news stories have also featured or mentioned POTS. These stories are far from satisfactory in their understanding of POTS. For example, POTS is mentioned in 2010 by ABC News[7]. This terrible article claims that POTS is “curable”. This is simply false; some people grow out of POTS or cure an underlying condition, but there is no known cure.

In 2011, the American Heart Association did an article on POTS that was picked up by some news channels [8]. Frankly, this article grossly oversimplifies a complex syndrome. It claims that most POTS patients have a heart “two sizes too small” and call POTS “Grinch Syndrome”. A small subset of POTS patients have the condition due to deconditioning. Some others with POTS get worse because of deconditioning as a result of their POTS. In this case their heart may be smaller than normal. However, this is not the case in many POTS patients.

RRWM01R

In 2013, the Huffington Post wrote an article addressing America’s Next Top Model contestant Alexandra Agro. [9] Alexandra Agro states that she has POTS and was too sick to compete. Alexandra Agro also expresses unhappiness with Huffington Post not understanding her condition and made a video to raise awareness[10].

This is a running list. If you find another mention of POTS in pop culture please message me and I will add it.

  1.  “Neurasthenia”Rare Disease Database. National Organization for Rare Disorders, Inc. 2005. Retrieved2008-05-28.
  2. Paul Wood, MD, PhD (1941-05-24). “Da Costa’s Syndrome (or Effort Syndrome). Lecture I”Lectures to the Royal College of Physicians of LondonBritish Medical Journal. pp. 1(4194): 767–772. Retrieved 2008-05-28.
  3. Cohen ME, White PD (November 1, 1951). “Life situations, emotions, and neurocirculatory asthenia (anxiety neurosis, neurasthenia, effort syndrome)”.Psychosomatic Medicine 13 (6): 335–57. PMID 14892184. Retrieved 2008-05-28.
  4.  Paul O (1987). “Da Costa’s syndrome or neurocirculatory asthenia”.British Heart Journal 58 (4): 306–15.doi:10.1136/hrt.58.4.306.PMC 1277260.PMID 3314950.
  5. Selian, Neuhoff (1917). “XX”.Clinical Cardiology. New York: MacMillan. p. 255.; cited on “Da Costa’s Syndrome”. vlib.us. Retrieved 2007-12-18.
  6. http://en.wikipedia.org/wiki/The_Choice_%28House%29
  7. http://abcnews.go.com/Health/teen-finds-cure-mystery-illness-mayo-clinic-mother/story?id=11142991&page=2
  8. http://newsroom.heart.org/news/1356
  9. http://www.huffingtonpost.com/2013/10/07/americas-next-top-model-contestant-too-sick-elimination-video_n_4055887.html
  10. https://www.youtube.com/watch?v=l8kqxvOY7M8

Medical Marijuana

Medical marijuana is a hugely controversial topic, but it doesn’t need to be! Much of the current research is biased towards finding the dangers of marijuana instead of looking at possible medical use. Researchers who have studied cannabis have found many uses for marijuana (in adults).

MRW no one on Imgur is anti-vaccine but we try to convince them that they're wrong anyway. - Imgur

Where is it Legal?

Recreational and medical use is legal in Alaska, Oregon, Washington, Colorado, and Washington DC. In these places you can get marijuana without a red card, or medical card. However, if you have a chronic illness I strongly recommend getting a medical card. You don’t have to pay as much in taxes and the people who work in medical clinics are even more helpful.

Medical marijuana is largely separated from the medical world. I have never even had it suggested for pain by a doctor. I had to seek it out information on medical marijuana on my own. Some medications have made it through trials and are prescribed, primarily by oncologists, for severe diseases such as cancer. If you are interested I recommend speaking to your medical doctor about it.

One reason medical marijuana is so separated from the medical community is because marijuana is still a scheduled 1 drug. This means it has been found that cannabis “has no medical use”, “high potential of abuse”, and “cannot be safely used under medical care”.

To give you a better idea of what this means, both meth and cocaine are Schedule II. That means these dangerous drugs have been determined to have medical use as well as being highly addictive. I think this is a huge misclassification and agree with John Gettman who pointed out, “Cannabis is a natural source of dronabinol (THC), the ingredient of Marinol, a Schedule III drug. There are no grounds to schedule cannabis in a more restrictive schedule than Marinol”. If we are making medicines from cannabis then how can we say it has no medical purpose?

Medical Marijuana - Imgur

 

Is it Safe?

Marijuana has no recorded incident of overdose. Not only does marijuana have fewer deaths than alcohol, but health costs for alcohol outweigh the costs for marijuana by eight times. Both alcohol and tobacco are legal but are considered far more dangerous than marijuana. A study was done on the link between marijuana and hospital visits. They found that marijuana did not increase the chance of going to the hospital.

Alcohol, and many other drugs, are neurodegenerative. This means drinking alcohol kills brain cells. Research suggests that marijuana may have the opposite effect.

To reach the lethal threshold of marijuana someone would have to consume 1500 pounds of marijuana in fifteen minutes. Therefore, marijuana users don’t have to be worried about overdose. That isn’t to say that all marijuana use is safe.

Possible side effects of marijuana use include dry mouth, paranoia, increased heart rate, tiredness, confusion, or memory problems. Because cannabis can raise your heart rate, I recommend being under care of a doctor if you have POTS and want to try marijuana. These side effects may be worse in people with mental illness.

There haven’t been many studies about medical marijuana and how it relates to driving safety. We do know that people should avoid consuming marijuana and operating any machinery. Driving accidents are a real problem with any drug usage and are potentially the most dangerous threat widespread marijuana usage holds.

As of now, evidence suggests marijuana as relatively safe for adults. However, when used regularly prior to turning 18 marijuana can cause problems. Research has shown that there is a drop in IQ associated with teen marijuana use. There have also been studies that suggest teen marijuana use may lead to memory problems.

hi, i'm dory - Imgur

Pain Management

Doctors are cracking down on drug seekers and those of us with chronic pain are taking the worst hit of all. It is true, many people abuse these drugs. Opiates have the potential for addiction and tolerance is a real problem. Despite these problems, researchers are taking their sweet time looking at marijuana as an alternative pain relief method. Instead of looking into a drug that has been proven beneficial (enough to make medical marijuana legal) politics is getting in the way of researching marijuana more and potentially helping many people.

Surprisingly, I have found that medical marijuana has less of a stigma than opiates (at least in Colorado). I have been to too many doctors with kidney stones only to have them tell me I’m drug seeking and turn me away with no relief in any form. The pain relief you get from marijuana is extremely helpful, but they won’t treat you like a criminal (unless you want to get into the whole federal crime issue). People who work at dispensaries are generally very caring and knowledgeable about their product. They have treated those of us with chronic illnesses with more kindness that most doctors have. They can make great recommendations as to tinctures, concentrates, edibles, and flower. Don’t worry if you don’t know what these words mean; they will be happy to explain them to you.

Cannabis has a lot less of a chance of addiction than opiates. There is a chance for addiction, but not due to physical dependency. Addiction occurs due to psychological dependence. More research needs to be done into the relationship between marijuana and addiction.

 

Medical Purpose

Medical marijuana comes in many forms. There are edibles, smoking, capsules, vaporizing, and now even juicing the plant. What works best medically depends on the type of symptoms or just personal preference. Different strains are better for different things. The two primary types of cannabis are Sativa and Indica. Sativa is more energizing while Indica is more relaxing. Indica is best used for sleep problems and pain. Sativa works best for depression and fatigue. Depending on the strain, both Indica and Sativa can stimulate appetite.

After a study on cannabis from the Institute of Health concluded that marijuana should not be used to treat any disease. However, the study concluded that marijuana can be valuable at controlling symptoms of these diseases. One such symptom is paresthesia. Marijuana is especially good for this “pins and needles” pain where opiates commonly fail. Marijuana also works as a muscle relaxer, and can help with multiple sclerosis, HIV, Tourette’s, and cancer.

While Marijuana may cause respiratory symptoms and side effects, the research that has been done indicates that smoking marijuana doesn’t cause lung cancer. In fact, the opposite is thought to be true. Research in its infancy suggests that marijuana may have cancer-fighting properties. While only anecdotal evidence in humans is available, this could have huge implications on marijuana’s scheduled status. Harvard researchers found that when mice with lung tumors were given cannabis cancer growth was cut in half. Nearly one in four of the mice were completely cured and the remaining saw a decrease in tumor size.

 

Cannabidiol (CBD)

It is possible to get marijuana’s health benefits without getting high. THC is psychoactive, but CBD (Cannabidiol) is not and has more medical uses. Cannabis with high CBD causes less memory impairment due to competition for the CB1 receptor. Strains with high CBD have significantly more medical value than the typical strains used for recreation. CBD is also completely legal in all 50 states without a medical license.

Despite the fact that marijuana may have negative effects on a child’s brain, some parents choose to give their severely ill children cannabis. Charlotte Figi, a young girl with Dravet syndrome (a severe seizure disorder), went from having hundreds of seizures a week to a single seizure a week. Charlotte used a strain of cannabis with high CBD content. There is now a similar strain named after her called Charlotte’s Web. Using strains that have a high amount of CBD and not THC may keep the negative memory and intelligent side effects at bay. Therefore, we may see research suggesting medical marijuana is useful to children and teens.

In addition to helping with seizures, CBD has also shown to have antimicrobial properties. One study found that cannabis may even help with acne. Studies have also found that cannabis may reduce the spread of HIV as well as decrease the risk of developing diabetes.

While cannabis may be dangerous in mental illness, CBD has potential use in mental illness as well. Cannabidiol (CBD) has been shown to work as well as traditional antipsychotics used in schizophrenics. Additionally, there are far fewer side effects in patients who were taking CBD than these antipsychotics. Cannabis also is helpful in anxiety and depression.

 

 

Any drug that has the potential to improve someone’s quality of life should certainly be researched more. Keeping marijuana as a schedule I drug is preventing us from seeing all the potential medical use marijuana has. While many of these studies are small and new, there is definitely hope that medical marijuana will be helpful to treating a variety of ailments.

 

Gardasil Hate

Earlier today a discussion regarding Gardasil began in a support group I am a member of. Many people are claiming that Gardasil, the HPV (human papilloma virus) vaccination, caused their POTS. As a result of the discussion, I began to some research of my own into these claims.

The cause of POTS is primarily unknown. So it is natural for patients to search for what the cause may be. However, these claims have not been scientifically substantiated and it is important they are before we let these claims affect our health decisions.

Correlation is not causation
This phrase is so ingrained in my brain from my first Statistics class that I will never forget it. Basically, just because two things are related doesn’t mean one causes the other. As a kid, my dad used to joke that he didn’t like to eat fruit because everyone who has ever eaten fruit has died(commence eye roll from my sister and I). Don’t worry; he knows this is not actually true. What is true is that there is a correlation between fruit consumption and dying, but it occurs because these are both universal human experiences.
Correlation doesn't imply causation, but it does waggle its eyebrows suggestively and gesture furtively while mouthing 'look over there'. - Imgur

POTS is most commonly diagnosed in women who are young. Gardasil is most commonly administered to young women. So there is an obvious correlation, but can we infer causation? Or is the only link that they are both common in the same gender and age? This same question comes up when people argue that vaccines cause autism. Vaccines usually are given just previously to when autism is diagnosed and people assume causation when it isn’t there.

One reason these claims fail is because they claim vaccines are the cause of autism or because HPV is the cause of POTS. There are children with autism who were not vaccinated. There are also people with autism who were not vaccinated. In the same way, there are people with POTS who never had Gardasil.

I believe the connection between these diseases and vaccines is due to the population involved. The symptoms occurring at the same time may seem like a clear cause for some patients. As S. Blitshteyn said, “It is probable that some patients who develop POTS after immunization with Gardasil or other vaccines are simply undiagnosed or misdiagnosed, which leads to underreporting and a paucity of data on the incidence of POTS after vaccination in literature.” POTS is a hard disease to get a diagnosis for and complicates this further.
If Google was a guy - vaccines. - Imgur

Reactions to Gardasil Safety Allegations
After allegations against Gardasil, the Vaccine Safety Datalink and CDC looked into the adverse effects. They found that all the severe adverse effects were no more common in the comparison groups. (Read more at http://www.snopes.com/medical/drugs/gardasil.asp#O3jC8GFs0WQMUEJk.99). I believe that more research should be done, but that is my feeling on most things.

In the group, I am in the discussion about Gardasil began when someone posted this article:
http://www.sciencedirect.com/science/article/pii/S0264410X15004375. Everyone jumped on the Gardasil hate bandwagon, but I am not sure they actually read the study. In the study it says, “In a population referred for symptoms of orthostatic intolerance and other symptoms consistent with autonomic dysfunction that began in close temporal association with a quadrivalent HPV vaccination, we identified a 60% prevalence of POTS”. Well, let’s take a look at what that result means with less jargon. “For patients with POTs symptoms that started around the same time as Gardasil, they identified 60% of them had POTS”. Is that really even surprising? All they concluded in this study is that people who had POTS symptoms, around the same time as Gardasil, were found to have POTS. The study again just demonstrates a correlation, but not causation.

So is it worth it? HPV
HPV is more common than you may think. HPV causes mouth cancer, throat cancer, genital warts and cervical cancer. HPV causes so many problems that I think people should have solid, scientific evidence before dismissing the vaccine as an effective preventative measure.

hpv-cancer-prevention

I can’t say with any certainty that Gardasil is completely safe, but I can tell you it is certainly not the only or primary cause of POTS. Many patients have not even had the vaccine! Research suggesting Gardasil causes problems are case studies of too small to be statistically significant. I can also say with certainty that HPV if a real problem in human health and that we should be working on preventative measures, ensuring that they are safe, and developing a vaccine that prevents more than four types of HPV. The causes of POTS, as always, need to be better researched and identified.

Wondering if you should trust an article? Here are some tips: https://chronicallyridicilous.wordpress.com/2015/04/14/lets-have-a-little-talk-about-a-thing-called-science/