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katyroq

Info for boss/coworkers

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I am trying to put together something to give to my boss regarding my POTS/dysautonomia.  Has anyone found something concise but informative? My boss is aware that I pass out a lot, but I had a situation the other day where I got very symptomatic due to heat. I'm a teacher, and in talking to my boss afterwards he joked "I guess if you pass out one of the students will come get me"

That just got me to thinking, would the students know what to do? Do they know where my boss's office is? Do I need to tell them anything? And secondly does my boss need to know anything more like if they call 911 as we have to in that situation... (mostly that I'm fine). I also take florinef and I know with that drug you're supposed to wear a medical ID (which I don't). I have never been sure if that was just because the med is for addisons disease where you are replacing hydrocortisone as well? Or am I at a risk just due to the fact that I probably don't make aldosterone anymore? (I guess this is a completely different topic) 

Sorry for the long post but I would appreciate input on the best way to make those around me aware of what to do or not do in an emergency. 

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Sounds wise to me. 

I don't have the information for you, but just thinking back to my school days, it would be a good idea to have a small paper with a few bullet points in your class room, maybe on your desk? that everyone knows about, a 5 minute chat about the subject and give someone the responsibility of finding your boss (and another if they are off).

It's also nice as they know what is wrong with you for instance when it's warm and feel more involved and therefore sympathetic. I think it's a good idea

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Would your boss read The Dysautonomia Project book?  It’s not long and written with information for friends/family in layman’s terms along with medical information for health care providers.

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Thanks for the suggestion @p8d. I will look into it. If it's short enough he may read it. I was hoping for something more brochure length that he could refer to if needed.  

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Thanks for the suggestions @CK1. You're right that letting the students know what's going on could help. I have been realizing that sometimes I may look unhappy when I'm not feeling well, and I guess they should know I'm not mad at them or anything

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That's tough! I worked as an assistant manager at a heliport. For over half a year I did fine, then suddenly POTS came back. It was hard to explain to my boss and it was embarrassing for an employee to find me on the floor next to my desk. What I ultimately did was write out an email to everyone explaining how my condition could affect THEIR day. Most of the time, people don't want to read long-drawn out literature on conditions that don't apply to them. My main points: 1. don't call an ambulance if I've passed out. 2. I'm not dying any time soon. 3. Sometimes I put salt in my water. Don't be alarmed, I'm not pregnant or crazy. 

Since you're a teacher, I imagine your students would be more curious about what's happening. This could be a good opportunity to take 10-15 minutes to explain the most basic parts of what POTS is. It could be good not just for your sake, but for theirs as well. When I was first experiencing symptoms of POTS as a youngster, nobody believed that I was truly suffering. I was bullied not just by kids but by teachers and parents as well. My pediatrician told my parents and my school that it was a behavior issue. Ultimately I was expelled from school because everyone around me believed that I was "faking". Educating young people about invisible illnesses could help them develop empathy for peers who may be going through health issues as well. Just a thought. 

Also, if your employer is asking you to provide documentation that you're actually suffering from a condition, it might be a good idea to have your doctor write out a note explaining what they think is pertinent for your boss to know. Doctors have to write that sort of stuff pretty often, so they would probably know the best words to use. 

Good luck! I wish you the best.  

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I took Florinef for a while and I am not aware of any requirement or recommendation to wear a medical bracelet. 

There is information on various dysautonomia websites including Dinet - brochures or sheets you can print out to give to others. But  i have tried to explain POTS to people and no one gets it and they might not need to, they just need to connect you with your emergency contacts in case you are ill or faint - family, hospital  and /or doctors. A simple explanation is that "I have very low blood pressure" or "My heart beats too fast".  It might be enough to just give them the list of contacts in case of illness/fainting.  

Although it makes sense to prepare I would also be optimistic that you haven’t fainted or needed emergency care yet - and hopefully that means you won’t!

 

 

Edited by yogini

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@katyroq - the ndrf.org ( national dysautonomia research foundation ) has a brochure on their web site that addresses patients, doctors, care givers etc about the special needs of dysautonomia patients. You can see if that is helpful?

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On 7/7/2018 at 8:58 PM, moosey said:

That's tough! I worked as an assistant manager at a heliport. For over half a year I did fine, then suddenly POTS came back. It was hard to explain to my boss and it was embarrassing for an employee to find me on the floor next to my desk. What I ultimately did was write out an email to everyone explaining how my condition could affect THEIR day. Most of the time, people don't want to read long-drawn out literature on conditions that don't apply to them. My main points: 1. don't call an ambulance if I've passed out. 2. I'm not dying any time soon. 3. Sometimes I put salt in my water. Don't be alarmed, I'm not pregnant or crazy. 

Since you're a teacher, I imagine your students would be more curious about what's happening. This could be a good opportunity to take 10-15 minutes to explain the most basic parts of what POTS is. It could be good not just for your sake, but for theirs as well. When I was first experiencing symptoms of POTS as a youngster, nobody believed that I was truly suffering. I was bullied not just by kids but by teachers and parents as well. My pediatrician told my parents and my school that it was a behavior issue. Ultimately I was expelled from school because everyone around me believed that I was "faking". Educating young people about invisible illnesses could help them develop empathy for peers who may be going through health issues as well. Just a thought. 

Also, if your employer is asking you to provide documentation that you're actually suffering from a condition, it might be a good idea to have your doctor write out a note explaining what they think is pertinent for your boss to know. Doctors have to write that sort of stuff pretty often, so they would probably know the best words to use. 

Good luck! I wish you the best.  

Thank you so much for sharing your ideas and experience. I like your 3 items you shared with coworkers. My boss is aware that what I have is not life threatening, and he had a brother who had weird BP issues growing up, so I think he actually has pretty good understanding of what is going on without necessarily needing to know all the details of POTS. Also he is a PhD in biology so is pretty comfortable with the physiology of it all. 

And I love your point about educating young people about invisible illnesses. I teach college students, so pots itself may be relevant to some of them. 

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On 7/8/2018 at 8:08 AM, Pistol said:

@katyroq - the ndrf.org ( national dysautonomia research foundation ) has a brochure on their web site that addresses patients, doctors, care givers etc about the special needs of dysautonomia patients. You can see if that is helpful?

Thanks! I didn't know about this site, so will definitely check it out. 

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On 7/7/2018 at 10:36 PM, yogini said:

I took Florinef for a while and I am not aware of any requirement or recommendation to wear a medical bracelet. 

There is information on various dysautonomia websites including Dinet - brochures or sheets you can print out to give to others. But  i have tried to explain POTS to people and no one gets it and they might not need to, they just need to connect you with your emergency contacts in case you are ill or faint - family, hospital  and /or doctors. A simple explanation is that "I have very low blood pressure" or "My heart beats too fast".  It might be enough to just give them the list of contacts in case of illness/fainting.  

Although it makes sense to prepare I would also be optimistic that you haven’t fainted or needed emergency care yet - and hopefully that means you won’t!

 

 

Thanks, I agree with your points. I'm thankful to be well enough to do my job nearly all the time, and I have pushed through symptoms for the last several years. I have a good understanding of my symptoms and usually can keep them under control in the classroom. These last couple weeks with the intense heat and improper AC in the classroom are the first time I've actually worried about anything happening. It was over 80 with 28 students in the room and I was running around helping them perform a lab for 3 hours in a row, twice in a day. 

Re florinef. The paper that comes with my prescription says "If you will be using this medication for a long time, carry a warning card or medical ID bracelet that identifies your use of this medication." I guess I could consult with my pharmacist or doctor on this, as I've been taking it for almost a year. 

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4 hours ago, katyroq said:

Thanks, I agree with your points. I'm thankful to be well enough to do my job nearly all the time, and I have pushed through symptoms for the last several years. I have a good understanding of my symptoms and usually can keep them under control in the classroom. These last couple weeks with the intense heat and improper AC in the classroom are the first time I've actually worried about anything happening. It was over 80 with 28 students in the room and I was running around helping them perform a lab for 3 hours in a row, twice in a day. 

Re florinef. The paper that comes with my prescription says "If you will be using this medication for a long time, carry a warning card or medical ID bracelet that identifies your use of this medication." I guess I could consult with my pharmacist or doctor on this, as I've been taking it for almost a year. 

I took florinef for a couple of years, I think.  I didn't know about this warning.  It definitely doesn't hurt to check with your dr/pharmacist.

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On 7/7/2018 at 10:36 PM, yogini said:

A simple explanation is that "I have very low blood pressure" or "My heart beats too fast".  It might be enough to just give them the list of contacts in case of illness/fainting.  

This is what I've done over the years.  Most people understand low blood pressure, which takes care of the explanation.  I then tell them what to do when I pass out and that it's no big deal, and that's the end of it. 

If anything, my close friends are the toughest to deal with because they've seen me so much and pick up on my symptoms before I do and are more insistent that I address it, whereas I can bluff my way with acquaintances. 

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