Here are a few sneak peak pictures. I will be back blogging more actively now, looking forward to it!
Thanks to everyone that helped make this a success!
--Claire
Showing posts with label Support Groups. Show all posts
Showing posts with label Support Groups. Show all posts
Monday, December 3, 2012
It's here! Dysautonomia SOS's Website is FINALLY Here!
YAY! The Dysautonomia SOS site is up and running.
Here are a few sneak peak pictures. I will be back blogging more actively now, looking forward to it!
Thanks to everyone that helped make this a success!
--Claire
Here are a few sneak peak pictures. I will be back blogging more actively now, looking forward to it!
Thanks to everyone that helped make this a success!
--Claire
Tuesday, November 27, 2012
Find Others! Join The Dysautonomia Social Media Directory!
Let’s connect online! Add yourself to our interactive map and find
others online and in your area. You can upload pictures, online contact
info, blogs, websites, and more!
https://www.zeemaps.com/map?group=460425#
***Under “Additions” menu, click on either the simple or detailed add form. You can select to be added as a patient, spouse, parent, or family/friend.
THANKS!
https://www.zeemaps.com/map?group=460425#
https://www.zeemaps.com/map?group=460425#
***Under “Additions” menu, click on either the simple or detailed add form. You can select to be added as a patient, spouse, parent, or family/friend.
THANKS!
https://www.zeemaps.com/map?group=460425#
Friday, November 23, 2012
POTS in the news!
Recently, there was a two part series about POTS that was very well written, and included the stories of the son of one of Dysautonomia SOS's volunteer's, and myself!
Here is a link to Part 1, which includes great info about POTS, and the story of John, a teen battling POTS with an amazing attitude:
by Sue Ann Rybak
John Point, of Chestnut Hill, was a typical kid who loved hanging out with his friends on the basketball court.
But in the Summer of 2009 he started to have flu-like symptoms: aches, fatigue, headaches.
“John was on the cusp of turning 13 and had really started to grow a bunch,” Janet Point, his mother said.
At first his parents and the doctors thought he had mononucleosis. But after a battery of tests, including CAT scans, an electrocardiogram (EKG) and allergy tests, and a heavy dose of antibiotics, the doctors could find nothing wrong with him.
“Somewhere around the third or fourth test for mono, the doctor said, ‘Well maybe he’s just making this up,’” Janet said. “I thought, ‘I don’t think he has invented this.’”
“You just couldn’t get John out of bed in the morning using proper or improper motivational techniques,” said Steve Point, his father. “Yelling at him and dragging him out of bed didn’t work. But, he didn’t seem like he was so sick that he couldn’t get out of bed.”
Finally, desperate to find an answer, John’s Dad sent out emails to members of the Chestnut Hill Sports Club.
“There is a giant email address list that goes around and there are a number of physicians on the list,” Steve said. “So, I thought maybe someone can recommend a doctor at CHOP. (Children’s Hospital of Philadelphia), who specializes in weird diseases.”
Steve said someone recommended Dr. Mark Magnusson at CHOP, and he performed a “tilt-table test,” which is one of the techniques for detecting POTS (postural orthostatic tachycardia syndrome). During a tilt table test, a patient lies on a table that moves from a horizontal to a vertical position. Measurements of heart rate and blood pressure are taken while lying flat and then again at intervals while tilted upright. The optimal duration of tilt testing in patients suspected of having POTS is 40 minutes or until they faint, at which point the test is concluded.
It was February 2010 when Magnusson diagnosed John with POTS.
According to the National Institute of Neurological Disorders and Stroke, POTS is a condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position. The primary symptom is lightheadedness or fainting accompanied by a rapid increase in heartbeat of more than 30 beats a minute, or a heart rate that exceeds 120 beats a minute, within 10 minutes of rising.
READ MORE HERE
Here is Part 2 (featuring me!):
by Sue Ann Ryback
(The second of two articles)
Claire Martin, 34, founder of Dysautonomia SOS: Searching Out Solutions, knows first-hand the obstacles and challenges of living with POTS (postural orthostatic tachycardia syndrome).
The mother of two young children, Lukas, 4, and Gabriella, 14-months, Martin had her first POTS episode at 24 while studying marine biology in graduate school.
“I was setting up an underwater research site in the Keys,” Martin wrote in an email during her twelfth day in the hospital on Wednesday, Oct. 24, “when out of nowhere, I had an extreme bout of tachycardia and felt like I was going to faint for the first time.”
Martin’s primary symptoms at first were bouts of tachycardia, lightheadedness, and fainting.
In 2003, Martin was forced to drop out of graduate school because her symptoms increased in severity and frequency.
Martin, who was studying sponge ecology and growth rate studies in the Keys said, “I was having trouble functioning, and I definitely couldn’t scuba dive anymore to continue my research.”
Martin, who now lives in Virginia Beach, Va., said she was a very active child, teenager and young adult. While she doesn’t know the exact cause of her POTS, she suspects it could have been the result of a spinal fusion in 1999. But, she didn’t develop POTS symptoms until years later.
READ MORE HERE
_____________________________________________________________
We are very thankful to see POTS in the news, and especially for a reporter who takes the time to convey accurate information. While I don't see myself as a victim, more of a butt-kicker (so to speak), I am so grateful to have been featured in this!
I encourage you all to reach out to local newspapers! Dysautonomia SOS has a press guide that can help you have your loved one (or yourself) featured locally, and spread the word about POTS and Dysautonomia. This is a great tool for upcoming events, and to make this condition a household name. Contact us if you'd like help!
I'll be back writing more soon, we are in the final stages of editing the new website, which has been taking all of my energy. Love to you all!
Claire
Here is a link to Part 1, which includes great info about POTS, and the story of John, a teen battling POTS with an amazing attitude:
Is it depression, anxiety or POTS? The first article of a two-part series
John Point
John Point, of Chestnut Hill, was a typical kid who loved hanging out with his friends on the basketball court.
But in the Summer of 2009 he started to have flu-like symptoms: aches, fatigue, headaches.
“John was on the cusp of turning 13 and had really started to grow a bunch,” Janet Point, his mother said.
At first his parents and the doctors thought he had mononucleosis. But after a battery of tests, including CAT scans, an electrocardiogram (EKG) and allergy tests, and a heavy dose of antibiotics, the doctors could find nothing wrong with him.
“Somewhere around the third or fourth test for mono, the doctor said, ‘Well maybe he’s just making this up,’” Janet said. “I thought, ‘I don’t think he has invented this.’”
“You just couldn’t get John out of bed in the morning using proper or improper motivational techniques,” said Steve Point, his father. “Yelling at him and dragging him out of bed didn’t work. But, he didn’t seem like he was so sick that he couldn’t get out of bed.”
Finally, desperate to find an answer, John’s Dad sent out emails to members of the Chestnut Hill Sports Club.
“There is a giant email address list that goes around and there are a number of physicians on the list,” Steve said. “So, I thought maybe someone can recommend a doctor at CHOP. (Children’s Hospital of Philadelphia), who specializes in weird diseases.”
Steve said someone recommended Dr. Mark Magnusson at CHOP, and he performed a “tilt-table test,” which is one of the techniques for detecting POTS (postural orthostatic tachycardia syndrome). During a tilt table test, a patient lies on a table that moves from a horizontal to a vertical position. Measurements of heart rate and blood pressure are taken while lying flat and then again at intervals while tilted upright. The optimal duration of tilt testing in patients suspected of having POTS is 40 minutes or until they faint, at which point the test is concluded.
It was February 2010 when Magnusson diagnosed John with POTS.
According to the National Institute of Neurological Disorders and Stroke, POTS is a condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position. The primary symptom is lightheadedness or fainting accompanied by a rapid increase in heartbeat of more than 30 beats a minute, or a heart rate that exceeds 120 beats a minute, within 10 minutes of rising.
READ MORE HERE
Here is Part 2 (featuring me!):
POTS victim has hope despite limited activity
Claire Martin with her baby girl, Gabriella.
(The second of two articles)
Claire Martin, 34, founder of Dysautonomia SOS: Searching Out Solutions, knows first-hand the obstacles and challenges of living with POTS (postural orthostatic tachycardia syndrome).
The mother of two young children, Lukas, 4, and Gabriella, 14-months, Martin had her first POTS episode at 24 while studying marine biology in graduate school.
“I was setting up an underwater research site in the Keys,” Martin wrote in an email during her twelfth day in the hospital on Wednesday, Oct. 24, “when out of nowhere, I had an extreme bout of tachycardia and felt like I was going to faint for the first time.”
Martin’s primary symptoms at first were bouts of tachycardia, lightheadedness, and fainting.
In 2003, Martin was forced to drop out of graduate school because her symptoms increased in severity and frequency.
Martin, who was studying sponge ecology and growth rate studies in the Keys said, “I was having trouble functioning, and I definitely couldn’t scuba dive anymore to continue my research.”
Martin, who now lives in Virginia Beach, Va., said she was a very active child, teenager and young adult. While she doesn’t know the exact cause of her POTS, she suspects it could have been the result of a spinal fusion in 1999. But, she didn’t develop POTS symptoms until years later.
READ MORE HERE
_____________________________________________________________
We are very thankful to see POTS in the news, and especially for a reporter who takes the time to convey accurate information. While I don't see myself as a victim, more of a butt-kicker (so to speak), I am so grateful to have been featured in this!
I encourage you all to reach out to local newspapers! Dysautonomia SOS has a press guide that can help you have your loved one (or yourself) featured locally, and spread the word about POTS and Dysautonomia. This is a great tool for upcoming events, and to make this condition a household name. Contact us if you'd like help!
I'll be back writing more soon, we are in the final stages of editing the new website, which has been taking all of my energy. Love to you all!
Claire
Sunday, October 21, 2012
Join the Social Media Dysautonomia Directory!
Hey folks! Wondering where all those people are online that have dysautonomia? It can feel pretty lonely having a weird condition that no one has heard
of, but supposedly a bunch of people actually have! We just have to
find each other!
We created a directory you can register for, and include your various social media contact names and handles. You can include as much or as little as you like. We are dividing it up based on location. There will be a page in the new website devoted to this directory.
One of the goals of Dysautonomia SOS (and this blog) is to connect people, so they can share local resources and support. The online community can be a great resource for finding others.
To register, you can click THIS LINK, or fill out the form below:
_______________________________________________________
The Dysautonomia SOS website will be up and running in the next week! Blog posts will resume after that, I have been spending all my time/energy on the nonprofit website, but STOP POTS will remain active and full of the opinions I can't share on an official organization website.
Oh, and the TWEET-A-THON is next weekend! DINET is on board as well, we are very excited to get #dysautonomia trending on Twitter! Here is a flier you can share where ever you want:
Love to you all, and thank you for the continued support!
Claire
We created a directory you can register for, and include your various social media contact names and handles. You can include as much or as little as you like. We are dividing it up based on location. There will be a page in the new website devoted to this directory.
One of the goals of Dysautonomia SOS (and this blog) is to connect people, so they can share local resources and support. The online community can be a great resource for finding others.
To register, you can click THIS LINK, or fill out the form below:
The Dysautonomia SOS website will be up and running in the next week! Blog posts will resume after that, I have been spending all my time/energy on the nonprofit website, but STOP POTS will remain active and full of the opinions I can't share on an official organization website.
Oh, and the TWEET-A-THON is next weekend! DINET is on board as well, we are very excited to get #dysautonomia trending on Twitter! Here is a flier you can share where ever you want:
Love to you all, and thank you for the continued support!
Claire
Saturday, June 30, 2012
Pregnancy and POTS: Experiences & Resources PART 2
In PART 1 of this mini-series, we discussed my first (excellent) POTS pregnancy and the data published regarding having healthy children when you have POTS. Now on to the tough part of this, as my second pregnancy was a nightmare. So here's an oversimplified version of what happened, and I'm including some thoughts and links regarding medications at the end.
The Second (NIGHTMARE) POTS Pregnancy:
In December of 2010, I knew something was wrong. I had been functioning most days for the last few years since my son was born, with fluctuating symptoms that I had been trying to hide from business related folks, and had given up fixing with doctors. But they were tolerable - episodes of tachycardia, light-headedness, chronic pain and fatigue after working long hours, and severe hypoglycemia.
I was suddenly feeling like I was going drop, and spinning, and my heart rate was nuts. I was also not retaining any fluids, no matter how much salt loading and drinking I did. Then I found out I was pregnant right after Christmas, and everything changed. Within a week, I was sick, bed bound, and knew something was severely wrong. The first week of January was my first trip to the ER after blacking out when I stood up too fast to grab my son (who decided climbing on a counter top was a good idea!), and I couldn't get my heart rate under control after, even laying flat. This is also when a month+ of vertigo began. Horrendous vertigo, like I had never before experienced.
The month of January I was back and forth to the ER and was admitted multiple times. Then in early Feb I was sent to a rehad/nursing center because I needed constant monitoring, continuous IV fluids, and had a PICC line placed. Only once the IV fluids were upped did I start to see improvements with the vertigo. Unfortunately, my PICC line was not cared for, and I developed massive blood clots along the line that were ignored by the staff at the nursing home. We had to threaten legal action to get me medically released, as the doctor at that horrible place blew me off and thought I was having muscle pain - and was massaging Aspercreme into my clotted area (nice).
After coming home, my nurse was appalled at what I told her and saw the state of my PICC line and sent me to the ER. We found out I had 5 DVT's and my jugular was completely clotted off. I hadn't been able to turn my neck for days, and they had been rubbing my clotted area at the nursing home, and the clots had broken off and started migrating to various dangerous locations. I was admitted again to the hospital, but was still blown off when I complained of extreme chest pain and difficulty breathing, and told "it's just your POTS" and sent home after a week. Well - it was not just my POTS - it was over a dozen bilateral pulmonary embolisms (PE's), plus a 2 cm clot in my right atrium. Turns out they had sent me home on the wrong dose of Lovanox (a blood thinner) and ignored my OB doctors demands for my clotting factor to be tested. If I had not kept going back to the ER and demanding they do something or I was going to pull out that stupid PICC line myself, I would have died, along with the baby. Being pregnant, bed-bound, and having a PICC line is the trifecta of blot clotting risks. Add to that the fact that they finally tested me for clotting factor conditions, and I came out positive for the Factor V Leiden gene, so basically I was a clot waiting to happen. It took me almost dying to get the treatment I needed, and even after that - it was a 9 month struggle and fight with the hospital and doctors around here. That's why I advise people to have a plan in place and a support network of good doctors familiar with your brand of POTS.
The Second (NIGHTMARE) POTS Pregnancy:
In December of 2010, I knew something was wrong. I had been functioning most days for the last few years since my son was born, with fluctuating symptoms that I had been trying to hide from business related folks, and had given up fixing with doctors. But they were tolerable - episodes of tachycardia, light-headedness, chronic pain and fatigue after working long hours, and severe hypoglycemia.
I was suddenly feeling like I was going drop, and spinning, and my heart rate was nuts. I was also not retaining any fluids, no matter how much salt loading and drinking I did. Then I found out I was pregnant right after Christmas, and everything changed. Within a week, I was sick, bed bound, and knew something was severely wrong. The first week of January was my first trip to the ER after blacking out when I stood up too fast to grab my son (who decided climbing on a counter top was a good idea!), and I couldn't get my heart rate under control after, even laying flat. This is also when a month+ of vertigo began. Horrendous vertigo, like I had never before experienced.
The month of January I was back and forth to the ER and was admitted multiple times. Then in early Feb I was sent to a rehad/nursing center because I needed constant monitoring, continuous IV fluids, and had a PICC line placed. Only once the IV fluids were upped did I start to see improvements with the vertigo. Unfortunately, my PICC line was not cared for, and I developed massive blood clots along the line that were ignored by the staff at the nursing home. We had to threaten legal action to get me medically released, as the doctor at that horrible place blew me off and thought I was having muscle pain - and was massaging Aspercreme into my clotted area (nice).
After coming home, my nurse was appalled at what I told her and saw the state of my PICC line and sent me to the ER. We found out I had 5 DVT's and my jugular was completely clotted off. I hadn't been able to turn my neck for days, and they had been rubbing my clotted area at the nursing home, and the clots had broken off and started migrating to various dangerous locations. I was admitted again to the hospital, but was still blown off when I complained of extreme chest pain and difficulty breathing, and told "it's just your POTS" and sent home after a week. Well - it was not just my POTS - it was over a dozen bilateral pulmonary embolisms (PE's), plus a 2 cm clot in my right atrium. Turns out they had sent me home on the wrong dose of Lovanox (a blood thinner) and ignored my OB doctors demands for my clotting factor to be tested. If I had not kept going back to the ER and demanding they do something or I was going to pull out that stupid PICC line myself, I would have died, along with the baby. Being pregnant, bed-bound, and having a PICC line is the trifecta of blot clotting risks. Add to that the fact that they finally tested me for clotting factor conditions, and I came out positive for the Factor V Leiden gene, so basically I was a clot waiting to happen. It took me almost dying to get the treatment I needed, and even after that - it was a 9 month struggle and fight with the hospital and doctors around here. That's why I advise people to have a plan in place and a support network of good doctors familiar with your brand of POTS.
Monday, June 25, 2012
Non-Profit Organization Update: How To Get Involved
HISTORY OF THIS PROJECT:
Back in November or so, I had started putting together thoughts and ideas for a new Non-Profit Organization (NPO) that would help improve the situation across Virginia, the DC area, and MD. I had big ideas about how to help people avoid what I have gone though for the last 10 years, but knew I could not do it alone, especially from a bed on a laptop. Part of my vision was uniting all the bloggers and organizations into one happy Dysautonomia awareness family, because everything seems very disjointed and fractured. Well, Team Fight POTS was birthed out of that, and it has been great to work with other bloggers and activists, and hopefully we have helped people along the way. Unfortunately, after reaching out to a few non-profits, not many actual organizations are willing to work together it turns out. Bloggers and frustrated patients, yes - organizations, no. So I decided I would start my own.
I began with this blog, and Team Fight POTS came shortly after, and in the process met a few folks with the same idea. Originally we tried to work with an existing NPO, but eventually decided to work together on a completely new NPO, Dysautonomia International, which I have mentioned on here before.
Unfortunately, after lots of hard work and many hours, I resigned and am no longer working with the group Dysautonomia International for a variety of reasons. We have some irresolvable differing issues and ideas about how to best achieve our goals, and I actually am going back to focusing on VA, DC, and MD. The situation here for dysautonomia patients is BAD, and there is a massive lack of resources and public knowledge. That needs to change. That can not be done with a blog alone.
We already have an amazing group of people to get things started (or continued, actually), and we are filing paperwork and finalizing our web content and team. More details will follow as they evolve. My goal has always been to educate educate educate - and empower patients to improve their lives.
So the new non-profit will be called.....drum roll please........
The NPO will focus on improving local resources, but will also provide (many free) materials for anyone anywhere with dysautonomia. Our focus will be on the Orthostatic Intolerance disorders: POTS, NMS/NMH, OI, and OH. We will provide basic info on the others. We have BIG PLANS for our region, and helping patients get the treatment they deserve, access to the resources they need, increasing awareness, and raising funds for research. AND FINDING YOUR POTS CAUSE! We hope to work in conjunction with a nationally focused NPO, and we'll see what happens, and few things are in the works.
We have a great group of volunteers and medical advisers, but are looking for more help. We are 100% volunteer run, and applying for 501(c)(3) tax exempt status. We are laying out clear cut ideas and goals so that everyone that volunteers knows where we stand and what we want to achieve. They include (but are in no way limited to):
- Focusing on POTS, Syncopal disorders (NMS/NMH, OI, OH), Autonomic Neuropathy, and finding the underlying causes of these disorders. Providing information of the other forms of dysautonomia and links to resources,
- Empowering and educating patients, caregivers, medical professionals, and the public by providing credible, medically reviewed educational materials and solutions for everyday life, available for FREE to everyone online,
- Providing free brochures and access to these materials in doctor’s offices, hospitals, schools, and other applicable public places across the VA/DC/MD region (you will be able to order these materials to print and distribute in your own region outside VA/DC/MD as well), thus increasing public awareness, decreasing diagnosis time, and improving treatment options for dysautonomia patients,
- Funding research, fellowships, new autonomic equipment, and projects that directly impact and improve the lives of patients in VA/DC/MD, &
- Working together with the medical community , other organizations, and public to provide support and improve the quality of the lives of dysautonomia patients in our region and around the world.
This may be wishful thinking, but who knows?
If you would like to apply to be on our Medical Advisory Committee or Board, please email Claire at dysautonomiaSOS@gmail.com. Volunteers do not need to be located in VA/DC/MD, as we will be providing services that aim to help and are available to EVERYONE.
Thanks!
Claire
Saturday, May 12, 2012
Save the Drama for Your Mama (and the Grinch)
I am fairly new to the Facebook online support community for Dysautonomia and POTS.
I have been a member of DINET for years, but stayed away when I was feeling well - it had become depressing and was scaring me that I would end up like others on the forum (ironic, since I now am!). But the forum was always kind, safe, supportive, and closely monitored - and I feel the people on there are super nice and not the types to attack others who have differing views. Nothing has changed, if you are looking for smart people to help you navigate resources and deal with dysautonomia, you should check out the forum. I became active again (it had been so long I had to re-register!) while half dead after all my pulmonary embolisms and in the hospital in early 2011. I'm glad I did, and I still am on there a few times a week reading and sometimes posting, because it is such a great place to find support.
After getting out the hospital last fall and becoming a Twitter fanatic, and realizing that I was not going to be out running marathons any time soon, I found a whole support network of tweeps as well. This is another valuable resource for chronically ill of any kind, just pick your disease and search it, and loads of people and tweets come up. I use #POTS, #Dysautonmia, #spoonie, and #chronicallyawesome the most.
 |
| This has nothing to do with this post. But I like it. |
After getting out the hospital last fall and becoming a Twitter fanatic, and realizing that I was not going to be out running marathons any time soon, I found a whole support network of tweeps as well. This is another valuable resource for chronically ill of any kind, just pick your disease and search it, and loads of people and tweets come up. I use #POTS, #Dysautonmia, #spoonie, and #chronicallyawesome the most.
Thursday, March 15, 2012
Skype Meet Up Tonight! 8PM EST
Hello VA/DC/MD (and beyond!) POTSies!
Tonight is our first try at a Skype meet up! Until we get enough people participating that we can split up geographically - I opened this up to anyone anywhere affiliated with POTS - including parents, caregivers, etc...
In order for you to participate, I need you to send me a contact request so I can add you to the conference call group "Team STOP POTS".
Here's how to do this:
1. Get a FREE Skype account at www.Skype.com
Tonight is our first try at a Skype meet up! Until we get enough people participating that we can split up geographically - I opened this up to anyone anywhere affiliated with POTS - including parents, caregivers, etc...
In order for you to participate, I need you to send me a contact request so I can add you to the conference call group "Team STOP POTS".
Here's how to do this:
1. Get a FREE Skype account at www.Skype.com
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