My Experience At The Dysautonomia International Conference 2015

The Dysautonomia International Conference was in July in Washington DC. I was able to attend this year and it was a really impressive and informative conference.

I flew to Dulles, Virginia a day early from Denver because I have never been to Washington DC and wanted a day to recover from traveling. Friday my parents and I drove around DC checking out monuments and museums. I stuck to my wheelchair so I would still have some spoons for the conference. 

Friday & Conference Attendance

Friday night we checked in. We got our name tags, a flash drive with some of the presentations, water, a pen, a bag, salt packets and some product used for dry mouth I can’t recall the name of. Next I played a “breaking the ice” game that definitely was directed at teens. At first I was worried because the conference felt like a younger crowd and I had doubts that I would have anything to talk about with a bunch of teens. These aren’t your average teens. Young women with POTS can be so mature. I spoke with one girl who was only fourteen but was more mature than some people in their twenties. I found myself really amazed by this a few times throughout the weekend. Going through something hard when you are young can really age people.

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The conference was primarily women, patients and caregivers. There were about 450 people and over 100 medical professionals. Most of the patients there were young women, many in their teens. There were some parents there without their kids and some patients there by themselves. Many others had their whole family supporting them at the conference.

I attempted to eat at the hotel restaurant (decent food overall- gross parfaits) and then went back to my room to get to sleep early for the super busy next day.

Saturday, CME, & Keynote

Saturday during the day the talks started bright and early. I heard really inspirational talks and presentations filled with more information than I could scribble down wildly. I will write more on these presentations in the future.

Lunch was arranged by region in hopes that you would meet other people close to you. The Continuing Medical Education (CME) and patients were combined at this point. CME had its own presentations geared at medical professionals throughout the conference. I went to a few CME sessions and was surprised by how much overlap there was in topics with the patient’s presentations. In fact, the patient presentations (presentations aimed for patients are caregivers) were even better than the CME presentations and that seemed to be to the consensus among medical professionals.

I was repeatedly amazed at the conference by how knowledgeable other patients, parents, and caregivers were. There were points, as there always are at this sort of thing, when people stood to ask a question but actually shared their life story. It always happens at this sort of thing. However, most of the questions were really well thought out and indicated a higher understanding of some more complex Biology.

Unfortunately at lunch Colorado was squished in with California and there was no one else at my table even remotely close to Colorado. They did a great job with the food and dietary needs. There definitely wasn’t enough salt (but is there ever). During the lunch break there was also a vendors fair. Dysautonomia International was selling awareness gear, NormaLyte, medical testing facilities, and books to be sold and signed. After the afternoon break there were even more presentations before the awards ceremony.

The keynote speaker was amazing. Dr. Lisa Sanders (real live House, MD) spoke about tough diagnosis, a struggle we all relate to, and was a wonderful speaker with interesting stories to share. Her book is now definitely on my to read list.

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It is never lupus.

Next, the physician of the year award was given to Dr. Blair Grubb. A video was shown dedicated to his wife who he lost this last year. It was absolutely beautiful and extremely sad. He didn’t speak, but it was beautiful and I don’t think he needed to.

Volunteers of the year Sarah Mendelowitz and Hanna Gully were announced and the people who ran the conference as well. They also really helpful in the talk about advocacy.

Meanwhile, there was more food my stomach wasn’t going to let me eat, drinks, and a very small dance party in the middle of the floor. Mostly teens, it was adorable. I didn’t stick around through much after that; I was exhausted from the day before.

Sunday & Lobby Day

The next day started bright and early with more talks and presentations. Later in the day we had a short lunch break and then more talks. About midday when I wasn’t too interested in the topics I ducked into a room near the presentations to participate in Mayo Clinic’s research. The research involved the Beighton Test (surprise I still have hEDS), questions, an examination of your legs for blood pooling, a blood draw, and a lying and standing blood pressure and heart rate monitor. It was nice to feel that I was contributing to learning more about POTS.

After the last presentation there was a final question and answer panel. It was a little crazy. A lot of the questions were great, some were not. A lot of the answers were great, or some went on and on for fifteen minutes saying nothing.

At the end of the day Sunday there was a training for Lobby Day which just under 100 people participated in. With how hot Washington DC was and how short on spoons I was doing I decided to skip the Lobbying. Honestly, I was amazed that I didn’t have to skip more presentations. It was a really long couple of days, especially after traveling with POTS. I opted for swimming and talking with some other POTS patients before I went back to my room for a movie.

Standing ovations were given multiple times at the conference. Everyone certainly deserved them- I just found it funny at a Dysautonomia Conference.

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Oh good we are standing again.

The overall feel of the conference was one of hope, support, and positivity for the future. I hope to be able to attend again. The people who ran the conference were really amazing and did an absolutely wonderful job.

19 Ways To Get Involved in Dysautonomia Awareness Month In October

Did you know that October is Dysautonomia Awareness month? Raising awareness is so important for Dysautonomia patients. Even though there are a lot of us, there are so many people (including doctors) who don’t know anything about Dysautonomia. The Dysautonomia International Conference had an excellent talk on things you can do to raise awareness. Many of these ideas are from Dysautonomia International and I threw a few in there as well. So here are some things you can do to get involved and raise awareness from most involvement to least (I haven’t done most of these so it is my perceived involvement/ difficulty):

1. Plan a Run/Walk**

This is definitely not something that happens overnight. I suggest planning ahead by months. If you want to hold a run or walk in October start planning now! These events raise a lot of money, but also include a lot of work and money invested.

2. Hold A Concert**

If you are a band, know musicians, and can get a venue nailed down concerts can be a great way to raise funds. This is another event that involves a lot of pre-planning.

3. Plan a Dance Marathon**

I am currently planning one of these for October in Denver. You have to use some of your own money to find a venue but beyond that it hasn’t been too difficult yet. If you live close (or even if you don’t) I would love your help.

4. Plan a Restaurant Night*

A lot of restaurants will hold fundraiser nights. Basically you invite people to the venue and a percentage goes to that fundraiser.Depending on the restaurant it may take more or less involvement.

5. Run/ Walk/ Knit/ Dance and Have People Pledge*

If you can run, walk, dance, bike, swim, or even knit for a while people may pledge money to your cause. For example, I have seen people pledging $5 for every mile you run. This can also work even if you are entered in an already established race. If you are running make sure and get an emu to follow you. They are great motivation- just look at this kid.

run like youre as terrified as this kid

6. Bowling/ Game Center Fundraiser*

Many bowling and entertainment venues such as Dave & Duster’s offer opportunities to rise funds as well.

7. Submit a Proclamation**

Getting politicians on your side tends to make things easier. Request a proclamation declaring October as Dysautonomia Awareness month.

8. Submit a Lighting Request**

This year some huge monuments are going to represent Dysautonomia awareness. For example, Niagara Falls will be lit up. Submit a request in your city. Do it soon; time is running out.

9. Plan a Bake Sale*

Everyone loves cake (unless it is that awful movie). Have your friends and coworkers bake and donate goods. Then sell them to raise money.

10. Plan a Dress Down Day*

If you work in a larger office dress down days are a great way to raise money. Talk to your boss about having a fundraiser where people donate money in exchange for being allowed to “dress down.”

11. Have a Fitness Class Host*

Some fitness classes and gyms will hold fundraisers in the form of workout classes.

12. Host a Trivia Night*

Around the country the trivia company Geeks Who Drink hold events called “Quiz for a Cause.” Teams pay to play, they receive a small cash prize, and most of the money goes to your fundraising.

13. Get the Local News to do a Piece on Your Efforts*

If you are planning an event you should definitely try to get local news stations to do a piece on the event. Even if you are not you can try to get them to write an article discussing your struggle and that October is Dysautonomia Awareness month.

14. Share Your Story

Writing down your story or sharing a video on Youtube is a great way to raise awareness and understanding. 

15. Dye a Streak of Your Hair Turquoise

Dying your1655583_10152423633392143_1345278656411378447_o hair, whether it is a streak or the entire thing, can be a good way to raise awareness. Make sure to tell people why it is that color when they ask (it gets old fast) or print out a brief explanation and hand it to them. My hair was turquoise for a bit but I wasn’t good about awareness. Having something you can hand to people is much easier than trying to explain POTS & trying to raise awareness on the spot.

16. Turn Your Mobility Device Turquoise

It doesn’t have to be permanent. For Dysautonomia awareness you can use tape, spray paint, or streamers to turn your wheelchairs and canes turquoise for awareness.
17. Attend an Event

If you can’t plan an event try and attend one if it is at all close. Maybe even consider a short road trip (if you are healthy enough) to support on of your fellow POTSies. Meeting people who support you and understand is really inspiring. Here is a list of some events.

18. Change Your Profile Picture

Change your picture on social media so that it is tinted turquoise, has an awareness ribbon, or wear awareness shirts.

19. Wear a Turquoise Article of Clothing All Month/ Awareness Gear

Some people wear a colored scarf or colored dress all month to raise awareness but it doesn’t have to be something large. For example, unless I am working I usually wear the same pair of shoes. My parents gave me turquoise shoelaces and I will change them in October. Little things can make a big difference for awareness too!

**These events take a couple months of planning or need to be done a couple months in advance. Begin during the summer or at least by August.

*These events likely take a month or month-and-a-half of planning. Start in at least late August/ Early September.

Any other ideas? Share with us and I will add them to the list.

Sunday Skeptism: Grounding/ Earthing

Having a chronic illness that has no cure and only a little research often makes people vulnerable to try nearly anything once. As a result, some scam artists prey off of that vulnerability and try to market products that do absolutely nothing or very little. Each Sunday I will investigate a treatment- do their claims lay in science or if they are taking advantage of people?

Science In This Article

Placebo effect– The effect that occurs when a patient takes a treatment and sees a positive result just because they are being treated. The result may happen even if the patient knows it is the placebo.
Blinded- The best studies are blinded. This means that the observer and researcher do not know which group is receiving treatment and which is not. Blind studies ensure that the researcher does not tamper with the results or give any subconscious bias while administering the test.
Electrons- Electrons are tiny negatively charged subatomic particles.
Grounding (electricity)- In electricity, the purpose of grounding is to reduce the risk of electrical shock and discharge static electricity.
Cortisol- Cortisol is called the “stress hormone” and is created in times of stress.

It Looks Like Science

Grounding is the process of going barefoot or making direct contact with the earth in order to access the earth’s “healing energy” in the form of electrons. Earthing and grounding are used interchangeably. Beyond this, earthing and grounding “experts” cannot even define their terms consistently. Some enthusiasts claim grounding is absorbing the electrons from the earth. Other enthusiasts sell mats and protective (from the electrons given off by the earth) coverings for your car, sleeping bag, carpet etc.
Grounding splits into two fields of focus. One focuses on contact with the actual earth which I see as the less harmful of the two because there is less money to lose. The other focus in grounding is on electrons on any surface and how to protect the body (probably because they make more money this way).

When you read about the claims by grounding enthusiasts they tend to throw around some scientific words that can be quite convincing. However, the science is either nonsense or claimed as fact without any proof. Grounding enthusiasts claim grounding creates a more stable bio-electrical environment within our bodies. Is there anything to prove it?

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Not-So-Scientific Claims

This is the story that was posted that lead me to making this post. I have many problems with this article and they begin before grounding even comes up.

Claim:”it is a recognized scientific fact that if a human baby is not held, hugged and touched enough, it will literally stop growing.”
Not only does this have nothing to do with grounding, but it is also untrue. This is the article they are referring to. The article clearly states that there is a link between brain development and human touch, nothing about suddenly not growing. The article makes it clear early on they don’t care about scientific integrity right off the bat and goes downhill.

The article shows promise when it starts mentioning scientific studies, but upon further inspection they aren’t very scientific studies.
Claim: “The study concluded that Earthing resynchronized levels of cortisol within the body”
Grounders claim that cortisol levels prove grounding helps. Researchers did see a decrease in cortisol levels after grounding, but likely not for the reasons they claim. It is likely these results come from placebo effect or report bias alone.

Claim: The studies also claim that patients using a grounding mat reported improved sleep, calm, and insomnia. Again, without a control group it is unlikely that the results were more than placebo effect.

In addition, the studies were not blinded. Blind studies ensure that the researcher does not tamper with the results or give any subconscious bias while administering the test. That makes the results less valuable. Not all scientific- looking articles are actually science.

There are known benefits to being outside and connecting to nature. Many people find reconnecting with nature relaxing and rejuvenating, but claiming a handful of health problems are cured by grounding is taking advantage of the vulnerable.

They Will Take Your Money & A Lot Of It

This glorified sleeping bag plugs into the wall and costs $259.99, but of course you can’t get just that. You also have to get a “continuity checker.” These companies are taking advantage of the average person not understanding electricity and electrons. They sell voltmeters as if they need to be especially for grounding.

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They Claim The Benefits Of Being Outside Are All From Grounding

Reconnecting with nature works to lower stress in many people, and the grounding craze appeals to this. Sometimes walking outside barefoot is nice and relaxing. Grounders claim that all the good feelings that come from being outside are actually from grounding. They claim that grounding helps, some even claims it cures, basically all illness and sell extremely overpriced junk to desperate people.

If you still aren’t convinced grounding doesn’t work and want to try grounding for yourself I suggest you do not buy any of their “grounding” products. Try it for free at your favorite park.

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The Problem With Ehler’s Danlos National Foundation (EDNF)

I usually talk and write about POTS and Dysautonomia. Like many people with POTS I also have hEDS (Ehler’s Danlos). The Ehler’s Danlos National Foundation (EDNF) had a conference this weekend. One doctor, Dr. Lavallee, managed to outrage most of the EDS community with just one slide.

justdoit

Dr. Lavallee put up this slide. If you cannot read it says:

“Just Do It!
Do not feel sorry for yourself
or I will introduce you to:
-US Veteran
-baby with retinoblastoma
GET OFF YOUR NARCOTICS”

Understandably people are upset. I have talked about it before and I will say it again. Stop comparing illnesses. Stop comparing pain! It is even worse coming from a doctor. In telling you he will introduce you to someone with it worse he invalidates your suffering. I also have no idea why being introduced to a US Veteran would make me “stop feeling sorry for myself.” My partner is a veteran and I think he would agree with me that EDS sucks. Ehler’s Danlos isn’t a joke and should be taken seriously. Plenty of Ehler’s Danlos patients have ended their life to get away from the pain, which brings me to Dr. Lavallee’s second point.

I understand wanting to avoid narcotics when you can, but sometimes they are the only thing keeping some of us alive. There comes a time in a lot of painful chronic conditions where you cannot and don’t want to live in that much pain. At that point isn’t it better to give patients narcotics so their quality of life is decent enough to not want tot kill themselves? I’ve heard a lot of stories of people at this crossroads. After a certain point of being in that much pain everyday narcotics ae the only alternative to suicide. Dr. Lavallee making a blanket statement of stopping all narcotics is just ignorant.

After this, and a lot of outrage, the EDNF posted this:

“I am not even home yet. I’m still in a hotel room, watching outrage unfold at Dr. Lavallee’s presentation of less than 24 hours ago, while now trying to form a response on a cell phone.

Conference materials include: “The presentations and materials remain the intellectual property of the presenters, and all rights are reserved to them. EDNF does
not control and is not responsible for the content of presentations.”

This is for two reasons. EDS knowledge changes quickly and views on treatment are radically different. EDSers are not best served, in my view, by having their access to these differing perspectives restricted to a narrow window of what is accepted this year, but by seeing the wide range of approaches and deciding which are valid for themselves. We are very different zebras. We are not all the same. What works for one may not, perhaps will not, work for another.

Second, speakers volunteer: time, thoughts, expenses. They come to talk to us because they want to, not because they’re paid to or told what to talk about or how to think.

Last in all this, I’d ask you to remember you are ripping apart a fellow EDSer, and one who helped EDNF survive and thrive. Dr. Lavallee has EDS, what he talks about he talks about from experience, both his own personal experience and that of his many EDS patients over decades. His perspectives may infuriate you, but they work for him and those he treats. Are those EDS experiences simply wrong because they’re not the way some of us manage our own EDS? Are some with EDS better than others? We’re a large, complex community and we’re never going to agree completely on how we each cope with having our own particular version of EDS.

Anyway: I am about to be gone on travel to get home, so I ask you please to be a little easier on us until we are all back to
our loved ones and can actually think. We can discuss this more over coming days; nothing that happened will be changed, and while outrage is fast, careful thought is not. It hasn’t been a full day yet since conference ended and typing on my phone is not easy on my EDS (and aging) fingers. Thanks for your patience.”

The EDNF should screen what is in presentations and presenters. The whole “intellectual property” excuse sounds like them trying to distance themselves and take away blame pointed their direction. It was still their conference; they are supposed to be helping those with EDS and supporting us. Instead they let it another doctor to tell us it is in our heads and we are being hyperbolic. Haven’t we had enough of that? Wasn’t the EDNF formed so we could raise awareness and education about EDS and stop this very thing from happening? If we can’t even get our own experts to show an ounce of compassion what hope do we have for the rest of the medical community and even society in general?

The EDNF points out that Dr. Lavallee is a volunteer and volunteered his time, energy, expertise. Well he ended up hurting this community more than he helped. That is like volunteering at an animal hospital to kick puppies, but we will let him kick puppies because volunteered, right?

This part is even more infuriating. Dr. Lavallee has EDS?! Yes, he has EDS and still can’t muster any sort of compassion or empathy for other’s with EDS?! I don’t understand why him having EDS means that we can’t disagree with his methods or dislike him. Knowing he has EDS basically just confirms my thought that he isn’t the greatest human being.

The EDNF talks like Dr. Lavallee just suggested a controversial treatment. No, he compared illnesses in an unhealthy, unprofessional, and unacceptable matter. He implied that we all “feel sorry for ourselves” which is not true. EDS sucks but the community doesn’t throw many pity parties. I see a community full of strong people doing the best they can through a really difficult illness.

In addition, the EDNF claims that his perspectives work for him and those he treats. After reading comments about Dr. Lavallee, I don’t think it sounds like he is so terrible one on one, but I suspect he just doesn’t make his backwards views known. The reviews are mixed but no one mentions him comparing illnesses or being a jerk. I hope he doesn’t say these things to people on an individual basis. Maybe we are now seeing his true colors? One patient in their review said that Dr. Lavallee claimed he could make her symptoms basically go away through exercise. A lot of us have tried exercise but it isn’t a cure-all for most. So no, EDNF Dr. Lavallee’s “perspective” doesn’t always work for his patients.

The EDNF’s mission statement states that “Ehlers-Danlos National Foundation creates resources for those affected by the connective tissue disorder, Ehlers-Danlos syndrome…[by] Providing a network of support and communication.” Well the only support I see from the EDNF on this issue is of Dr. Lavallee.

Dr. Lavallee is a large supporter of the EDNF and has been involved with them for a very long time. I suspect this is part of the reason they sided with Dr. Lavallee rather than supporting us like they should be. It is just disgusting.

hookers

(I’m not actually going to make my own EDNF with blackjack and hookers)

12 Tips For Traveling with POTS

Questions about travel pop up a lot and I can certainly understand why traveling with POTS is a battle. When flying you face problems such as security lines, standing to get off the plane, change in pressure, change in elevation, and a lot of walking. Driving doesn’t offer a wonderful alternative to flying. Often driving includes sitting in the same position, limited food, and drink options, or motion sickness. Often the combination of these factors leads to a lot of POTS patients avoiding travel. If you do decide to travel I offer up the things that have made traveling bearable for me:

1. Keep All Medications Near You
This applies to traveling by car, boat, plane, or by sled dog. Anytime you travel you should pack a bag that you are going to keep close to you. This bag should stay right below your feet so you are ready for anything that may arise.

Travel creates stress on our bodies and sometimes some of your most rare symptoms or an abnormal presentation of your symptoms will pop up. For example, on a flight to Arizona I decided not to bring migraine medication on the plane. I didn’t have an aura or the beginning of a migraine and it was a short flight so I thought I would be fine. Usually, my migraine onset is very gradual. Change in elevation and pressure, as well as possibly stress, triggered a migraine immediately and suddenly. The entire flight was miserable and I had trouble making my connecting flight.Therefore, I advise you take into account that your body may not react “normally” (like it’s ever normal) and be completely prepared.

2. Hydrate
I know you feel like you are listening to a broken record with everyone telling you to hydrate; this time it is even more important. Airplane cabins are kept extremely dry. This leads to dehydration and is why drinking extra water is especially important. When I have a flight I try to drink 1 liter of water before security. Then, immediately after security I buy another liter for the plane. I try to finish it before the flight attendant comes around for drinks and order another water. So you get the picture- drink a lot of water. Surprisingly, you may not find yourself peeing more often as the body retains water due to dehydration.
hydratte
I know on car trips it can be tempting to skip the water so you aren’t constantly having to stop to pee. It is absolutely not worth it. You may get where you are going more quickly, but you will feel so terrible you won’t be able to enjoy it. In addition getting up and walking every couple hours is better for you in general. So keep up the hydration- no excuses!

3. Nausea Tips
I am often nauseous even without motion sickness so nausea is a real problem when I travel. Sometimes Zofran and Promethazine are the only things that touch my nausea, but there are some other solutions that you don’t need a prescription for.

I was skeptical about acupressure being helpful for nausea (haven’t found many scientific articles on it), but it either is effective or generates a profound placebo effect. Acupressure is when you put pressure on a part of your body for different effects. Applying pressure at the inside of your wrist right between two ligaments for a few minutes is definitely worth trying as there are essentially no severe side effects. If nothing else it may help distract you from your nausea.

I recently tried GinGins and they were strange, but I felt like they actually did help. Ginger is said to settle the stomach (which is why ginger ale is a common home remedy for nausea) and these candies are essentially ginger in a more manageable amount- well compared to eating raw ginger. I found no scientific evidence to support this claim.

Peppermint is also said to help settle stomachs. I found no scientific evidence to support this claim. If you like chewing gum on a plane I suggest peppermint gum. Otherwise, I would suggest peppermint candies with real peppermint and not too much sugar.

Cold is one of the things that helps me the most with nausea. Taking off a layer, pointing the tiny AC at my face, and sucking on ice all help me be less nauseous. I order ice water to sip on if I am extremely nauseous and it helps me not be sick.

4. Consider Using Assisted Mobility Devices
It took me a while to feel comfortable using a wheelchair at the airport; it helps so incredibly much.  All you do is go to your airlines desk to check in (where you check baggage) and tell them you need a wheelchair. If you have your own wheelchair just tell them you need assistance at the same desk. Then they often have you wait and someone comes and gets you. I look healthy and have never been asked why I need the chair, which is a common problem with POTS. They wheel you past the security line, you stand for a second in the body scanner, then sit back down. Even though you do skip the security line I don’t recommend planning on it and showing up later. Often many people need help with wheelchairs and you have to wait for someone to help you for quite a while.
If you have your own wheelchair you can keep it with you until the gate and gate check it. Unlike literally every single other thing with airlines, checking a wheelchair is free. Traveling is also easier if you get a lightweight wheelchair.

wheelchair
Wheelchairs aren’t boring and lame- look at this guy!

5. Compression Tights
Compression tights can be hot and unattractive, but don’t have to be. Try Rejuva Health or these are the ones I wear. They are so comfy and come in cute bright colors so my tights look more like a fashion statement and less like an old lady in medical wear (although some of those grannies rock it).

Compression tights help with blood pooling from sitting in the car or on a plane too long. On a plane, the cabin pressure is lower which may exacerbate POTS symptoms. After all, even healthy people feel worn out after long flights. The pressure put on your legs by the tights really does help me with POTS symptoms. Compression tights also help prevent blood clots when sitting for long periods during flights or long road trips- two birds one stone.

6. Small meals with a lot of extra salt
Pushing salt is usually important on normal days, but when you are flying it is even more important. I try and get something salty both before my flight and during. I usually choose trail mix, pretzels, or salted nuts. Eating a lot of salt earlier in the day and even the day before you travel may help. Keep your salt up after your flight too.

It is best to keep up your salt through eating many small meals. Small meals keep you from becoming nauseous. When you eat a large meal blood can move into your abdomen and worsen your POTS symptoms.

7. Buffer Days
Buffer days are an absolute must have for traveling with a chronic illness. What I mean by buffer days is that I schedule at least one day before and after travel just for rest. Travel is hard and if I don’t give my body the rest it needs whatever I’m traveling for ends up being a disaster.

ready to party

8. Preboard Flights
If you tell your airline you cannot stand they will give you a preboarding pass. That way you are the first person on the plane and minimize time standing. So far I’ve had no problems with airline employees not treating me with respect despite my illness being invisible.

9. Choose Your Seats
Some airlines (Southwest is all I know for sure) don’t assign seats. If you can use an airline that doesn’t assign seats it is amazingly helpful. I always sit in the very front row so I can get off the plane and don’t have to stand waiting for people.

No matter what your means of travel, sit in front or where motion sickness will be the least awful whenever you have a chance. This especially helps me on road trips and my friends and family are nice enough to let me always sit “shotgun.” If your friends and family are less helpful tell them sitting in the back will likely result in you puking in their car. They change their minds pretty fast.

10. Be Ready For Weird Temperatures
I made this mistake at the Dysautonomia Conference. I was really ready for warm temperatures, after all Washington DC is much warmer than Denver. Well, what I didn’t prepare for was the air conditioning being so cold to make up for the heat outdoors. I had to go to Target just to buy warmer clothes. A lot of times those of us with Dysautonomia don’t respond to temperatures correctly so having backups for any temperature is essential.

11. Insurance for Flights & Flexible Plans 
Planning in advance with a chronic illness can be challenging. I always pay more for insurance and the ability to cancel flights, hotels, car rentals, etc. I can’t know how I will feel that day until the day of; this has saved me a lot of stress.

12. Put Your Feet Up When You Can
Put your feet up whenever it is possible. This is difficult to do on an airplane unless you are in the first row, but you can put your feet up before you board and after. This will help minimize blood pooling and help your POTS symptoms.

On road trips it its much easier to put your feet up as long as you aren’t driving. Be forewarned that sitting with your feet up in the front seat of the car may make car crashes more dangerous. If you are worried about this put your feet up in the backseat instead of the front where the airbag is.

6 Things Sick People Need to Stop Doing to One Another

Support groups are wonderful for those of us with illnesses others just don’t get. Groups on Facebook can be great and convenient, but also hostile and dramatic. I know illness can lead to high tension, but we are supposed to be supporting each other! So here are some things I noticed happening a lot; things that we need to stop.

Don't Be A Dick! - Imgur

1. “This cured me; it will cure you!”
Suggestions are more than welcome in support groups, but people often fail to make a very important distinction. Saying something may help or it helped you is not the same as insisting something is a cure. Uncured and under-researched diseases are likely to witness this. People insist a workout program, biofeedback, a diet, or drug is the cure for their disease. While we are all incredibly happy that it helped for you please stop getting people’s hopes up! To imply that because you were helped by something everyone will be is incredibly ignorant.

2. “I accomplished _____ through hard work; you can do anything!”
Support groups are about support- celebrating good and bad. So if you graduated nursing school or ran a marathon I will be so happy for you! However, saying “don’t let this get you down” or “you can do anything too” is doing more harm than good. Some people are genuinely limited by the same disease. Not being able to accomplish things like exercising, attending school, or working is devastating. Feeling like you should be able to because others with your condition can is even worse.

So I suggest that we encourage each other but keep in mind that some people are extremely limited. Not all of us can “push through” and run or work again. Being unconscious tends to put a damper on that.

3. “It could be worse”
It can always be worse. It is true, but it shouldn’t affect how we empathize with each other. Someone’s struggle doesn’t have to be diminished by another struggle and seeing someone struggle with something worse isn’t going to make you feel better.

When I find annoying sob stories on the internet, I remember the wise words of Dr House. - Imgur

4. “At least you don’t have…”.
Nuanced from the “it could be worse” in #3 the “At least you don’t have…” differs in one key way: comparing yourself.

I will admit that I have fallen into this before. Sometimes when I see people complain about something that doesn’t seem like as big of a deal I fall into this mindset. I try to remember is that just because I may feel that things are worse for me doesn’t make things easier for the other person. It is still difficult for them! And that is the entire point, they are seeking support, a place where they can complain and relate with others. When we compare our situations to others we are taking that place away from one another.

5. “I would rather have…”

Another form of the “At least you don’t have…” is the “I would rather have…”. I have heard patients with invisible illnesses say things like “I would rather have cancer.” While I think (or hope) that most of them meant they wished they had a condition that has more research, advocates, and visibility in the media, this is still a massively insensitive thing to say. For many people with cancer it is the hardest thing they have ever been through; they wouldn’t wish it on anyone. For you to say you wished you had it trivializes their struggle. So instead say, “I wish my condition was more visible and researched.” Come on guys.

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6. Attack someone who is trying to understand/help
I see this so often. Someone will post to the group with a question and people will answer with their experiences or opinions. Then everyone jumps down each other’s throats. Experiences and opinions shouldn’t be attacked. Seeking information should not be attacked. Differences in opinion are okay. Just stop attacking each other!

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We are supposed to be supporting each other. I know in a group I am part of multiple threads have been taken down due to the animosity in the comments.If everyone stopped saying these six things to each other we could all get along perfectly!

Just keep in mind that we are all different and experiences won’t be the same. Don’t compare experiences or assume they have been similar. Support each other! It is kind of the entire point of a support group.

Do No Harm: A Ranking of the Harmful Things Medical Professionals Have Put Me Through (Part 1 #13-8)

The medical profession is supposed to be about helping people. I have been lucky enough to have some wonderful, caring, and compassionate health care professionals. I have also had some absolutely horrific experiences healthcare professionals. Dealing with doctors and nurses who don’t understand and make my life more difficult has been one of the hardest parts of having a chronic illness for me.

These professionals go to school for years and we are told to trust their medical expertise. Blindly following advice from a bad doctor can get patients killed- so should we blindly and always follow their guidelines? Many of us with chronic illnesses have been through the experiences I describe below so it is no surprise that some of us have anxieties about going to the doctor and don’t always trust those in the medical profession.

We turn to these professionals in a time of great need and commonly aren’t even treated as human beings. Unfortunately, I know I’m absolutely not alone. Stories of terrible and harmful doctors and nurses fill my support groups on a daily basis. So here it is- a list from least harmful to most harmful (in my personal opinion) of what medical professionals have put me through in the past six years:

13. Letting Their Ego and Arrogance Get in the Way
We have all heard of them, doctors who think they are god’s gift to the earth. They went to medical school or nursing school and now know everything and are never wrong. There is no way a patient could help them understand their condition or offer any input into their personal care. After all, this information is coming from a lowly patient.

kanye8When these arrogant doctors can’t easily find a diagnosis suddenly the patient is the problem. They will tell us we need to be more positive, try harder, and better comply with treatment (even if we already are).

“Have you tried like… not being sick?”

Other egotistical doctors will tell patients that they are are faking it for attention, that it a psych issue, or that their patient’s pain tolerance is just too low (see #10). These doctors are on the patient’s side until they can’t figure something out; then they turn into villains in their patient’s medical care.

In Helpful Medical Professionals:
One thing I look for in doctors is the ability to say “I don’t know.” Some of my conditions aren’t understood well so I don’t expect my doctors to know everything about everything to do with my condition. Admitting they don’t know the answer to something means they are more willing to ask a colleague or do some research.

12. Refusing to Research My Condition
I understand that working in the medical field is difficult and busy. However, if a patient seeks medical help and the medical professional hasn’t heard of their patient’s condition or only vaguely remember things from school decades ago it is essential to take the time to research their condition. Different conditions can change how medications work and need special considerations. If someone doesn’t know about a condition, does nothing to find out, and decides to treat their patient anyway they are putting their patient in danger and not giving them the best care.
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 In Helpful Medical Professionals:
Medical professionals who are willing to research conditions they aren’t experts in are definitely keepers. These professionals actually care and it makes a world of difference in our care. If they get stumped they may ask a specialist for help, but they won’t dump their complicated patients.

11. Deciding You’re “Someone Else’s Problem”
It is common for complicated cases to be passed on from doctor to doctor. That is why some POTS patients have to see over 36 doctors to get an accurate diagnosis. Doctors commonly dump “difficult” patients with ridiculous excuses. I even had a doctor yell at me and tell me to go elsewhere. I had just moved and simply needed a doctor to prescribe antibiotics for strep throat. He did so and told me to work on finding a more experienced doctor because he didn’t think he could help me. Fair enough.

I chose this doctor so I could get in quickly while looking for a more experienced doctor (which can take months to years). He was good enough for what I needed in the short term. A week later I developed pleurisy. For whatever reason, this tends to immediately happen to me after colds, the flu, strep, and most viruses. All I needed was a steroid shot- I’ve been down this road many times.

The doctor absolutely chewed me out for coming back to him. I was too complicated and he wouldn’t treat me. When I explained I had an appointment with a much better doctor than him the next week and just needed help until then he realized what a jerk he was being. Needless to say, I did not go back to him.

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One doctor who I thought really wanted to help suddenly made an 180 after I had been seeing her for months. In the beginning, she was so excited to help me and try everything she could. In the end, she decided to suddenly drop me. She later became an oncologist which seems like a terrible choice for someone so lacking in empathy.

Recently I had a pain management doctor tell me “they don’t manage chronic pain.” That’s the exactly the purpose of the clinic. When my case became complicated they just gave up and didn’t even care enough to come up with a reasonable excuse.

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 In Helpful Medical Professionals:
Medical professionals who stick with complicated cases are hard to find. If you do find them, keep them around! Unfortunately, it is hard to tell if your new doctor, physician assistant, or nurse will actually stick around and not write you off further down the line.

10. Calling Your Pain Tolerance Low
Medical professionals commonly write off their patient’s pain as exaggerated or made up. In response to pain complaints, these professionals insist their patient simply has a low pain tolerance.

This happened when I had my wisdom teeth taken out. My recovery was absolutely dreadful and lasted weeks longer than it should have. I actually had to withdraw from school because I was so sick between dealing with my wisdom teeth and my concussion I had at the time. I woke up in the middle of the procedure moaning in pain- even with anesthesia. I am absolutely positive the oral surgeon hit a nerve during the procedure, but instead of admitting to her mistake the doctor told me I must have a low pain tolerance.

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I was also told my pain tolerance was low when I had my pulmonary embolism (a blood clot in the lung) too.

“You just have the stomach flu and a low pain tolerance.”

I’ve had multiple doctors tell me I couldn’t have kidney stones because I wasn’t outwardly displaying my pain. They insisted that something less severe was going on and I was overreacting to pain by coming to the doctor.

“I’ve seen grown men screaming on the floor in the fetal position. You can’t be in that much pain.”

1 (3)They were obviously proven wrong. Of course, I received no apology. Patients with chronic pain get outstandingly good at pretending to not be in pain and putting on a brave face. For example, as long as I am under a 7/10 on the pain scale, unless you know me really well, you will never just how much pain I’m in (unless I tell you). Pain looks different in every person. This attitude is just ignorant.

 In Helpful Medical Professionals:
Medical professionals who actually believe their patients are hard to find. It is pretty easy to figure out early on if they are going to support you and believe you or dismiss your pain early on. Doctors who understand that severe pain doesn’t always mean laying in a fetal position screaming are the best doctors.

9. Believing You Are Just Not Trying Hard Enough
The first line of approach to treating POTS involves lifestyle changes. You can read more about them here. The lifestyle changes are not fun by any means but compared to my symptoms these changes were worth a try. For a while, I complied with every single suggestion. I was the perfect patient. When I didn’t improve dramatically, I started to get blamed for my symptoms not improving because I wasn’t trying hard enough. Often lifestyle changes alone aren’t enough to help manage a condition. I have since figured out what changes actually are beneficial to me and my doctors respect that. When a medical professional blames their patient for not getting better it is time for them to get the boot (assuming the patient is honest with their doctor).

tumblr_inline_npt6s4jAb81s0vf4f_500Most of us who are chronically ill desperately want to feel better. We will try nearly anything that may work to improve our condition. So a doctor blowing their patient off because the patient doesn’t get all better from what they suggest is absurd. Some patients are exceptions, but it isn’t acceptable to immediately jump to blaming a patient for treatment that doesn’t work for them.

In Helpful Medical Professionals:
I work out 5-6 times a week in an attempt to help my symptoms. Exercise is incredibly hard every single day. It is easily the hardest lifestyle modification to comply with. Pushing through severe pain, exercise intolerance, dizziness, and extreme tachycardia is a battle every single time I exercise. Having doctors who acknowledge the hard work I am putting into my health, whether through working out or otherwise, is incredibly refreshing. The best medical health professionals acknowledge the hard work their patients put in ( assuming they are making changes), not chastise them for not trying hard enough. One example of an awesome, supportive doctor acknowledging their patient’s hard work can be found within this lovely article.

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8. Not Following HIPPA
All my illness began when I was 17 so for a while my parents were involved in my care and medical decisions. By the time I had turned 18, I was the expert in the family on my body and my conditions. My parents did research but know a lot less about my condition than I did. So when at 19 years old a medical professional called my mother to relay incredibly sensitive information (a test testing for cancer) I was livid. My mom called me right away to tell me the news, but playing telephone with sensitive information is unacceptable!

While this has been the most blatant example of my privacy being disrespected I have had other times in which my privacy has been violated. For example, lab technicians have taken pictures of abnormal and interesting test results that had my personal information on them and I watch them share the results with their friends. Unfortunately, not all medical professionals take privacy seriously.
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 In Helpful Medical Professionals:
This one is simple- find doctors who respect patient privacy. We all have a right to have doctors who share medical information with only the people the we choose; it doesn’t matter if they are family. Life and death cases, in which the patient is unable to make their own medical decisions, are obviously an exception. In general, if a medical professional violates patient privacy, they need to be immediately reported to the medical board.

These are pretty terrible things to happen, especially from a profession dedicated to doing no harm. And it gets much worse! Watch for part two where I discuss the top seven harmful things I have witnessed from the medical profession.

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Update: Because I’m Special Like That

Like a lot of people with Ehler’s Danlos III, I have back problems and hip problems. In the past, I have received epidurals for the pain and the injections have been lifesavers.  This time my body decided to be uncooperative.

The first injection went fine, but as they began the second injection Cerebral Spinal Fluid began to leak. They stopped the procedure to make sure it would stop. It did so I went back into the operating room a second time. When I came to I could feel nothing from the waist down and couldn’t move anything from the waist down either. Now I am not talking about numbness or weakness. I had full on temporary paralysis. It was such a strange feeling!

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Looking awesome in my funny hat and gown.

My doctor wasn’t too worried and assured me it wouldn’t be permanent. She said out of he two thousand procedures she has done this has only happened once before. Because I am special like that.

Over the next few hours I began to regain feeling in my hips, legs, and finally toes. The saddest part of the whole experience is that when I could feel nothing from the waist down was the least pain I’ve been in for the past six years. It was a strange thing to enjoy (only because I knew it was temporary).

Now the recovery is extremely painful and slow. I can only help some of it helped. We will see.

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.

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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