Re-Intro

[LisaColumbus]

Hi all,

I have been a member of the forum for awhile now. I appreciate all of the advice that has been given in the past, it is so very helpful. I decided to do this re-intro post because although I recognize screen names, I never really felt that I knew anything about the people behind the names. So here is a glimpse of me

My name is Lisa and I am from the Columbus, Ohio area. I am Mom to 3 beautiful kids (daughter aged 21, Son, age 19, daughter 14) I divorced way back in 1991 and was a single Mom, I recently (Dec 27th) got remarried. In addition to my kids, I also am an avid animal lover. We have 6 dogs and 3 cats.

Prior to becoming ill, I had run a large catering company for many years. When symptoms started becoming problematic, I took a position with a larger catering company as the assistant to the President and the manager of IT. I got very ill in 2002 and took medical leave for 6 months and then returned to work. I did rather well until fall of 2004, at which time I dropped to part time. In January of 2005 I had to stop working completely and have been pretty much housebound ever since.

The hardest part of adjusting to this illness has been the lack of activity. I had always been a very energetic, always on the go type of person. Very much the workaholic. Also the cognitive impairment has been very depressing to me.

So anyway, that's a little about me. I hope to get to know all of you a little better.

[Ernie]

Hi Lisa,

Welcome back. I am sure you will get to meet new people here.

[Jacquie802]

Hi Lisa (congrats on your wedding!!!)...

My name is Jacquelyn, known to everyone as Jacquie. I am 21 years old. I live 30 min away from Boston and about 20 min. from Cape Cod, Massachusetts. August 1, 2003 I began to suffer from the POTS symptoms as well as SVT/PSVT. The docs believe that a viral infection of some sort caused my POTS. For a while I was able to work. I have had a few ablations, which helped with the arrhythmia. In May of this year my POTS really began to take it's toll. I have been out of work since June of 2005 and was fired in August due to my health.

I live with my mother and my cat, Lucy Coco and I have one sister. I love to paint, draw, etc. I am very much a people person which is funny, because I used to be very shy . I hope to be able to go to nursing school once everything is under control. I would like to work in cardiology and work with people with autonomic dysfunction, etc. I love being able to help people when I can.

I look forward to "meeting" everyone else here! Thank you all for your kind words and advice. It is very much appreciated.

Jacquie

[LisaColumbus]

Thanks for sharing Jacquie. It must be awful having to deal with this when you are so young. I have often said that I am grateful that I was able to have my health and energy while my kids were young.

My sister also has this, she became symptomatic in high school and I know how difficult it was for her.

I hope you are able to get it under control and realize all of your dreams and goals.

Edited January 30, 2006 by LisaColumbus

[Jacquie802]

Hi, it's weird this whole POTS thing. I never imagined that I would be applying for SSI/SSDI at the age of 21...I just wish I knew if and when this would go away!

[Aprilmarie52]

Hi lisa! I am april and I am 22. I was diagnosed with POTs at 17. I have a one year old daughter and A husband who acts like he is 5. I am a full time student and I work full time. Thanks for introducing yourself. Congrats on getting married!

[LisaColumbus]

It's very nice to meet you April. Enjoy that little one. I miss the baby stage so much!

[Guest tearose]

Hi Lisa and welcome back!

In the archives somewhere I think there was a thread with lots of personal data.

I tend to be more general on the open forum cause I'm just "old fashioned" that way.

I too am a mom, with two wonderful sons who are now both away at college.

I miss them terribly, they are such great sons!

Anyway, I have a great husband and the burden of income is all on his shoulders.

I am trying to figure out what to do in this next phase of my life.

I can't work a "normal" type job because I just can't sustain myself.

I am trying to get a handle on what I can do in spite of the horrible challenges dysautonomia has given me.

I have the hyperadrenergic form, and as I grow older, (although in my mind and heart, I will be 37 forever),I am starting to see wear and tear on things like my liver, my brain and stamina, to name a few.

I will gladly share any of my similar experience!

I also am returning from some time away...

best regards, tearose

[LisaColumbus]

Welcome back Tearose! It sounds like you and I are pretty much in the same boat. We are both lucky to have hubby's that will assume the income burden. I am very lucky in that regard, hubby never gripes about money or being stuck doing the majority of work around the house. He was a real trooper when it came to learning how to do laundry. Right now we are considering moving if we can find a ranch style home in our area. Living in a split level makes it nearly impossible for me to do much of anything.

Anyway....it was very nice to learn more about you and I will try to locate the old thread to learn more about others.

[Guest tearose]

I forgot....silly brain of mine....We moved to a ranch style home a little over a year ago and it has been a MAJOR help to me! I can go days without having to do stairs! This is major because my heart rate and the fluctuations use to wear me out daily. It is something you should not compromise on...unless you find a mansion with an elevator...(kidding)

I also have a stair chair that goes from the main living space "down" to the basement where we have an apartment and some storage space. The stair chair is great and helpful but I am glad, very glad I don't need to use it daily.

It took us two years to find the right home...keep looking!

Are you staying in Ohio?

best regards, tearose

[MomtoGiuliana]

Hi Lisa and welcome back. Thanks for your intro/re-intro. I am so sorry that things have gotten worse for you over the years. I hope you will find some relief with time.

I have had mild symptoms since high school, with a challenging bout in my late twenties, that eventually went away without diagnosis or appropriate treatment. During pregnancy, at age 33, I had a very hard time with POTS, with no diagnosis until my daughter was four months old. Fortunately I eventually found an EXCELLENT local POTS specialist and my health has fairly steadily improved since my diagnosis in 2003.

My daughter is now three years old. I work 3 days a week as a land use and preservation planner for county government. I feel I could come back to work full-time if I needed to now. My husband is a builder/developer?we are building a new home, and considering adoption of a second child.

I have a master?s degree in conservation biology and was a peace corps volunteer in Africa in the early 1990?s. A part of me truly never left Africa, and I hope to go back someday to work again.

I manage the Faces of DINET webpage?and I encourage all who want to participate to e-mail me for the URL and send me photos. It is a nice way to share more about our personal lives and accomplishments.

Katherine

[Babettegall]

Hi Lisa,

Nice to meet you! I'm a 37 year old mother of 2 (girls ages 19 & 17), and the wife of a very special man. We live about two hours north of Columbus, in Stow. Moved to Ohio back in 2000, which is when all my symptoms began. I just got my pots dx last week, so the whole thing is very new to me (not living with it, just finally having a name for it).

I've been working as a supervisor for the past couple of years at a large organization, however, have utilized the FMLA available since January 3rd. I hit the wall, crashed and burned with my symptoms. My employer has been pretty understanding, however, due to the nature of the business, it won't be long before they will be counting the days when they can replace me. I really enjoy my job, and hate the thought of sitting idle. My family has been very supportive and constantly telling me that I need to start taking care of me, which is what I'm doing right now. I'll let the whole job thing play itself out and worry about ssi or other forms of income when I get through this "episode".

I can't begin to express how much it means to me to know that there are others out there who can truly relate to what I'm going through. It's nice to not have to always burden family with my day to day difficulties/complaints.

I wish you well and pray that we all find ourselves enjoying more "normal" days than not.

Babs

[persephone]

Hi,

I thought maybe I'd join in on this too- there are so many new faces here!

Welcome new people:)

[corina]

hey persephone, how about william as your new man??? (sorry, just kidding, but i really think he's cute!)

corina

[persephone]

hey persephone, how about william as your new man??? (sorry, just kidding, but i really think he's cute!)

corina

I know...he is lovely but a bit too tall for me- he must be 6'6", whereas I'm 5'1"! Would look a bit ridiculous=i'd have to stand on a box to kiss the guy!

[Jacquie802]

Persephone, go for Harry, he has gotten alot cuter than his brother!

[persephone]

Harry POT HEAD? Nah way! I don't think he's even fully related to Wills--looks a bit too much like James Hewitt if you ask me!!!

Wills had lovely eyes. I spoke to him a few times, he was always a sweet heart.

Looked **** good while playing rugby- VERY muscular. TASTY!

But alas, not Scottish, so not for me (I need a Scotsman, I think).

[d4g7]

Cool - I've only just stumbled across this Chit Chat Forum (I had my favourites set to the main forum).

I'm Daniel, age 28. I live in Noosa, Queensland, Australia, am originally from Wainuiomata, New Zealand. Lived in Wiltshire, UK for about 3 years before moving to Australia.

I'm vegetarian, have a little Chihuahua called Chyna (which I normally like to spell Chynnna - just for fun). And fight as much as I can for animal rights.

I have an avid interest in languages - Japanese, Chinese (Mandarin and Cantonese), NZ Maori and Spanish. However, Japanese has to be my favourite - and I do a lot of Shodo, or Japanese Calligraphy. Last year I was commissioned to do some pieces for a Japanese Haiku Poet, by the name of Miyazaki. He liked the fact, that as I was non-Japanese, I wasn't bound by the same rules regarding calligraphy as most Japanese are (as it is taught in schools), and the end result was great, and has been published in his book.

I play the bagpipes - I've been playing them since I was about 14 - so for a long time now - and I'm still very passionate about them - they have to be my most treasured possession - I got them as a gift, they are African Blackwood and engraved silver - I'm glad, as I wouldn't like to have ivory or horn etc. I play in many competitions, and have a huge interest in the classical bagpipe music called 'Piobaireachd'. I seem to being playing a lot at Burn's Suppers, Weddings and Funerals lately, and it's great, 'cause the money is fantastic - $100.00 for a 15 minute medley. This week, I have made more from piping than from my normal job! So, I'm starting a new savings fund - I'm not sure what for yet - but I'll get there.

I'm also an absolute Star Trek Fanatic - Voyager especially.

I work full time as an office manager, and also study full time (dual degree - Business and Arts). Would like to go on and do a Masters in Applied Linguistics.

I've had a heart condition called Wolfe-Parkinson-White Syndrome all of my life - and the only way it could be corrected was a complete AV node ablation, and a pace-maker - which I decided against, as it is normally fairly well behaved.

I got diagnosed with POTS in 2003 (I Think - might have been 02 or 04???). After frequent fainting, and tachyardia, and just a general feeling of being unwell - I was told by my family practioner that I was depressed, and therefore went to see a Psychologist, who was great, and assured me that I was depressed, but he believed it was the result of something 'organic', it wasn't all in my head. He referred me to a neurologist, and I was lucky enough to get one that has a interested in dysautonomia. Now, I'm under her care, although my POTS isn't being controlled well, despite medication - they are still doing lots of tests to see if there isn't something else lurking around.

Generally I pretty happy with my life, although the POTS does get me down, as I can't do all the things I want to do, and seem to miss out on a lot - but I am adapting to my new life, and like Persephone, I am sure a day will eventually come, where I will wake up and feel completely normal again.

Anyway, there's plenty more about me, but I don't want to bore you all.

It's great to meet everyone. Since finding this forum, it has helped answer many, many questions for me.

Daniel

[LisaColumbus]

Thanks everyone for the intros! It's so nice knowing more about everyone. I have been desperate to find a sense of community online, since I rarely get out of the darn house. I think I am really going to enjoy chatting with all of you.

[dizzygirl]

Fun topic!!

HI!!

My name is Linda.. I am 23 yrs old. and I live in Pennsylvania in the USA.. I have had POTS pretty much my entire life.. and finally got diagnosed in 2002.. I am having a very rough time with it.. but am still trying to keep a positive vibe on things...

before I became severly sick w/POTS. I spoke out against domestic violence and childabuse and went into the local highschools and colleges speaking as survivior w/ the local agency(s) who were in charge of public awareness.. about these epidemics ..with the hope of atleast helping one person.. if not more.. and education is the key!!

It was my goal before becoming sick to go thru nursing school.. and to also obtain my degree in Social work.

I want to be a socialworking Nurse!! and I'd be darn good at it to!!

I primarily want to work with the preemie babies in neonatal or to work in labor and delivery.. and if not that with the elder persons.

From 16-20 I worked in the health care field as an home health aide and a CNA.. Iprimarily worked with alzheimer/dementia patients.. in the nursing home..I really loved what I was doing. I enjoyed working with the elderly. I also worked in an ICF(intermediate care facility) facilty for the mentally/physically challenged.. and truly loved my job.. though very Uh "hard work" at times.. I found pleasure in being able to brighten someones day weather to give them a hug.. sit with them and talk and listen..or just hold there hand and bring a smile to there faces.. during a rather bleak situation..

I had a favorite patient w/ dementia who would yell out lottery number as well as Bingo numbers non stop!! she'd yell B 10 at the top of her lungs.. then proceed to tell us all at the Nursing home that took care of her every day.. that she "HIT the JACKPOT" and won the lotto and was taking us all to Florida to live with her. so that we would have to work anymore!!" I really miss her! and every now and then I will still hear her yelling out LOTTO LOTTO LOTTO! I WON THE BIG ONE!!

Funny sint it how one person can bring so much humor and joy into a situation!

had to share one of my favorite resident stories with you all!!

It is my hope that one day I can complete nursing school and schooling to be a social worker.. and truly do what I lUV to do.. take care of people!!

Edited February 3, 2006 by dizzygirl

[shannon]

Hi!! It's been nice to read everyone's replies to this question.

My name is Shannon, and I am 20 years old. Right now, I am working on a degree in social work. I'm also co-chair of 2 student organizations on campus, which is lots of fun. I love school, but it is so tiring. By the time the weekend comes, all I want to do is sleep!!

I was diagnosed with POTS at age 17 (in 2003), but i think my first symptoms were at the age of 13. When I was about 15, I really crashed. I had a good doctor, but he thought the problem was cardiac, so he couldn't figure out what to do with me. Eventually, he referred me to Mayo, and I got to see Dr. Low.

Finding this forum has really made a huge difference in my ability to cope with POTS. Emotionally, it can be tough having a chronic illness ... and even tougher having one that nobody has heard of!! I still feel isolated with POTS, but now I at least know that there are other people going through many of the same physical and emotional pains as me. It makes things a little less lonely. Thanks for your endless support, everyone!

[lalalisa]

Hello everyone! Lisa, thanks for re-introducing yourself.

My name is Lisa too! I am 26 and live in KY with my husband. After college we got married and 3 months later I got sick. (2002) It has also been a huge adjustment for me as i was so active before and now i'm close to housebound. I was a music major (vocal performance) in college and then began looking into nursing schools when I realized my illness wasn't leaving. My husband is in seminary and also works full time as the provider - he is a huge blessing to me and has been a good listener as I process this illness and just need to talk. I am thankful that i found this website as it's the one place where I feel "normal".

On my good days I enjoy cooking (I sit on a stool at the counter/stove) and scrapbooking.

We hope to have children some day. It's so difficult wondering if I'll get better and be strong enough to care for a child some day.

I hope you find some encouragement here,

Lisa

[OCsunshine]

Well hello there!

It has been a joy reading everyone's posts on this topic! I read so many random posts and then see so many names on the side of the screen, I really get confused as to "who" is "who." :-/ I'm so ashamed!

Well, I just joined this discussion board a few months ago and I feel right at home. It's wonderful to meet other people with OI. It just makes me feel at peace and makes a 'hard day' just not as hard anymore.

So, my name is Rachel and I live in Maryland, USA. I'm 24, married, and have a lovely doggie named Lucy that is my true companion. I like interior design and helping disabled kids- I have a special interest in Autism.

I was a healthy active girl until one day in 8th grade Social Studies class I blacked out and was unconscious until my mom came to pick me up from school (the teachers and nurse all tried to keep me "upright" and wake me up, which kept the blood from getting to my head- stupid people!). Anyway, I was never right since that one episode. I was diagnosed with Mono and spent weeks totally bedridden. Weeks turned into months and I was unable to even sit upright for any length of time.

My local GP sent me to Dr Rowe at Hopkins who recognized my illness (Neurally Mediated Hypotension) right away. He is an angel. Long story VERY short- he got me on a combo of meds and physical therapy that helped me out, and I slowly improved.

Since then my life has been full of ups and downs with my health- going from mostly active to mostly bedridden for months at a time. You just never know how the year will turn out! I struggle day to day with lightheadedness, dizziness, migraines, heart palpatations, joint and muscle pain, and a million other symptoms...

I feel so happy to have this discussion board. I don't have a "POTS" diagnosis but I totally relate to every single thing people talk about on this board b/c NMH (aka NCS) is so darn close.

It's been wonderful getting to know everyone and hearing your highs and lows with this illness. I love having friends around the world who actually "get it." ;-)

[Wufflebear]

This is fun!

My name is Heather Michel and I live on the southern oregon Coast, near North Bend, Oregon. I am 33 years old and started having problems (fainting, massive headaches etc.) at age 4 or 5. I was sick a lot as a kid (hospitalized at 9,11,17) but no one knew what it was so they called it a variety of things (migraines, hypoglycemia, IBS, Chronic Fatigue, Fibromyalgia etc...etc...and put me on lots of meds that never really helped and sometimes made me sicker. Anyway, I finally got thru highschool and then in college I studied abroad in Spain for a term. Ended up getting my B.S. in Biology and Spanish. Then I worked as a researcher at Wolf Park in Indiana for a summer before coming out to Oregon from Kansas City, Mo.

I have worked a variety of jobs...some more succesfully than others....lol

Now I live in a house that is up on a bluff and overlooks the ocean. (actually the ocean is about 4 miles away but since we are up so high we can see it.) I have a husband and an almost 5 year old little girl and 5 cats (linus, kyla, pippin, meriwhether and ziggy). I work now for a software company in a tiny town north of where I live and do internet training, translation (spanish-english) and call center type support for them. (radio station software - schedules the commercials, music etc that you hear on the air..plus bookkeeping software etc.)

What else... I love to knit when my eyes and body will let me...I like to sew too, but I am not very good at it. (not that that stops me, as my daughter can attest to!)

in 2002 I finally got a diagnosis of "vagal syndrome" and I go back this march for more info / testing... Since my daughter was born in 2001 I just feel like I am progressivly nose diving. Such a long journey!!

I am very glad I found this place! It is great on good days and bad! (it is also good for running me over my breaks at work!! oops.)

[Sue]

Hi everyone!!

I'm Sue, I live in Macomb, Michigan. Half hour from the hyped-up superbowl!!!! Its been crazy this week!!

I suffer from NCS, symptoms include alot of unsteadiness, light headed, fast and slow heart rate, blood pressure fluctuating always.

I have a wonderful family who keep me going. Husband, two teenagers, Kelly 18, Stephen 17. We also live with my parents, my dad is paralyzed from a stroke, and my mother has severe athritus. We sold both family homes about 8 months ago and bought a larger home together. We all help each other. and there is always someone home. My favorite companions are my two dogs, Buddy my yellow lab and Bandit my cocker spaniel. Talk about unconditional LOVE!!! Even on those really bad days, they just cuddle up with me and keep me company.

I love photography!!! I have always wanted to go professional, but I don't see that happening. On good days I love to just go out side with my dogs and take pictures of everything. Especially the neighborhood kids. Other than that I just love being with my family and feeling safe.

I love chatting, so feel free to email me anytime!!

((Hugs to all))

Sue