joiedevivre516 Posted April 9, 2006 Report Share Posted April 9, 2006 Hi, everyone!My name's Kate, I'm 18 years old, a freshman at Georgetown University, and I was diagnosed with POTS on Thursday after three years of endless tests, hospital stays, doctor referrals, and FINALLY a positive tilt table. While I'm relieved to actually know what's going on with me and thrilled to find what seems to be a VERY supportive community, after talking to my doctor, several nurses, and doing my own internet research I'm feeling very, very overwhelmed with everything.I'm a serious pianist and I'm studying to work as a human rights relief worker in Africa someday. I want to grow up to get married, have a family, and truly do some hands on things to change the world. Now I'm terrified that I won't be able to do this. Just having a normal social life seems daunting enough - I've lost a lot of friends who haven't wanted to put up with the strains of having a friend with POTS. Luckily my parents are two of the most incredible people in the world, and I do have a few good friends who have been there for me through everything, and who are so fun to be around.I'm really hoping to find other people out there who would like to talk and can share their stories with me. I'm great at listening, and as much as I'd like to find supportive people, I'm also great at BEING one of thos supportive people!Is it really possible to date, fall in love, get married, have kids, and have a successful career with POTS?I'd appreciate any wisdom or just input you have to offer!What a wonderful community we have here! Things seem a lot less terrifying with all these resources.Kate Quote Link to comment Share on other sites More sharing options...
AJVDK Posted April 9, 2006 Report Share Posted April 9, 2006 Kate,Welcome! I am glad you found us! This place have been my saving grace. I found this site a few days after I was told I had POTS also. I have found great support, and made friends here. This is a place I can talk about how I feel and everyone gets it. My life with POTS seems to be a roller coaster. Somedays I am great on high, and other I am at the bottom. I nolonger work due to my POTS. I had to quit working and am now staying home. I have a loving Husband that supports me in everyway, and I have a four year old son. Even though I have POTS and can no longer work I still have a full life. I have learned to enjoy the little things. I am hoping one day to join the working world again. I am hoping sooner then later, but we will take it one day at a time.I wish you the best of luck, and again Welcome you! Amy Quote Link to comment Share on other sites More sharing options...
bttrflyamby1981 Posted April 9, 2006 Report Share Posted April 9, 2006 Welcome Kate,I have had POTS symptoms for a few years now and I find it a hard at times but it's not the end of my life.If I want to do something bad enough, I find a way.You can do the same.......don't give up. You can still change the world! In a way your lucky finding out you have POTS before you started your family,now when you meet someone and they chose you for your great personality, they are also choseing to be with someone who has a tough road ahead of them. (with their eye's wide open)My husband had no idea that when he married me that I would become ill, and he's the type of person who doesn't deal with any illness well. He's doing better since I found this forum, (not sure why) but it does make it easier.Everyone is different though so I can't say for sure how your life will turn out........Stick to your plans, be who you want to be.You might have to do it a little differently then you had wanted to, but know that you can do anything you set your heart out to do. Just at a much slower pace. You have a strong personality and I think you WILL make a difference no matter what path you choose.Good luck,Amber Quote Link to comment Share on other sites More sharing options...
Ernie Posted April 9, 2006 Report Share Posted April 9, 2006 Hi,Welcome aboard. We have a few young adult here but if you want some more you can find them on dynakids. You will be able to share your dreams and hopes. Quote Link to comment Share on other sites More sharing options...
Poohbear Posted April 9, 2006 Report Share Posted April 9, 2006 Hi Kate!Welcome! I'm glad you found this site but certainly not glad you had a need to find us.I have been dealing with this disorder in a big way for the past 10 years (in smaller ways prior to that).You will find that everyone is different; some people are responsive to different medications and lifestyle changes and are able to manage their disorder very well. Other people have tried every medication out there and every non-pharmacologic treatment with little success (or at least not enough for them to live even a semi-normal life).I've experienced every gamut in dealing with this disorder. Some of those years I was able to hold down a very active and challenging career; now I'm no longer able to do that.Try not to panic or borrow worries. You are right....the information in the beginning of this can be overwhelming. Sounds like you are able to handle school so that's a GREAT thing. It is sad that you've lost some friendships because you can't "keep up" socially but I promise you in time you will see that they weren't really friends (not that it doesn't hurt you though). YOU are your best advocate and the only one that can "fight for your life" so to speak. Try different things to see what works for you (please visit the main pages of this website outside of the message board) and you may find that in order to function you have to be very cautious about your sleeping habits, eating habits etc etc.http://www.dinet.orghttp://dinet.ipbhost.com/index.php?showtopic=1954http://dinet.ipbhost.com/index.php?showtopic=4411Happy reading....but try not to overwhelm youself. Life is all about trying to achieve a balance Quote Link to comment Share on other sites More sharing options...
Sunfish Posted April 9, 2006 Report Share Posted April 9, 2006 hi kate - others have offered great info/resources already but i did want to chime in with my welcome as well. i'm sorry that you have reason to be here but glad you found us i was just a bit younger than you when i was diagnosed with NCS and went to school just up the road from you in baltimore (at Hopkins) so can relate to trying to manage a "normal" college life and one's health at the same time. it's not always easy and everyone is different but many do so successfully.like others have said, there are many variations in the realm of dysautonomia in regard to severity, response to treatment(s), etc. so while getting advice & reading others' experiences is priceless, realize that we're all different.hang in there & try not to get too overwhelmed... melissa Quote Link to comment Share on other sites More sharing options...
joiedevivre516 Posted April 9, 2006 Author Report Share Posted April 9, 2006 Thanks to all of you for all of that wonderful advice and your kind welcomes! I'm feeling a little bit more confident about things thanks to all of you, and I'm definitely having a better POTS day today than I was yesterday! I'm about to get signed up with Georgetown's disability program, which will provide me with more options and leeway when it comes to classes and health. I've also decided to stick with only a 3-4 course load per semester, as opposed to my 5-6 course load I was handling this year!Thanks for EVERYTHING, and I'd love to hear even more from everyone. Quote Link to comment Share on other sites More sharing options...
dianaD Posted April 15, 2006 Report Share Posted April 15, 2006 Hi Kate,I'm so sorry that you are going through this! Dr. Grubb ("THE" POTS doc), says that there is a 75% chance of complete recovery if you get pots as a teen. Please check for my post on your question about your piano and singing. The world NEEDS what you have to offer with your music. And having this disease will give you empathy beyond what most people are capable of. You CAN come out of this a better person!!You WILL see the light at the end of the tunnel someday. Hang in, Kate! Quote Link to comment Share on other sites More sharing options...
JaneEyre9 Posted April 15, 2006 Report Share Posted April 15, 2006 Hey Kate!It's good to meet you. Sounds like you are doing everything right...getting a diagnosis, researching it, finding support, registering with disabilities services, and cutting down on your course load. All these things will really help you manage your symptoms.You also sound like you have a great attitude about friendships. It's really true...the good friends will stay with you through the tough times.I am going through the same challenges and questions that you are asking...what will my life be like, will I have a career, will i be able to have a family...etc. I've taken comfort in the accomplishments of each person on this board. Many here have jobs, spouses, and families. When it comes to our dreams, we may get knocked down, but we don't give up! And somehow it's easier to make it through those bad POTSy days with this support group.I hope you find the info and support you need here! Quote Link to comment Share on other sites More sharing options...
Richland acres Posted April 16, 2006 Report Share Posted April 16, 2006 Kate,Welcome!!! I am glad you found us, this support system is awesome here not to mention the incredible information! I am glad you came across the site. I totally can understand how you feel with having plans for your life and now wondering if it can ever happen the way you planned. I am not as young as you, and I am not telling how "Young" I am, ha, but will say my dreams changed also, so I can relate. I worked hard pushing for a goal to be come real in my life. I wanted to have my own training facility for dogs and specialize in training service dogs. This was so out of reach when I was so sick and found out what was going on. I had flares at this time. I beg God to just let me acheive training just one dog for some one so i could make a difference in some ones life, even if it was only one life I just wanted it to happen. Well I am happy to say I had it happen 7 times!( I trained 3 out of those 7, other s helped train the other 4) It was not easy and I had a lot of help and support from friends and family, but it happened, I opened up my training facility had 7 dogs trained and adopted and just recently closed it. I got what I wanted, it may not have turned out like I originally planed, but I still acheived part of my dream and I am so happy I did. So just to let you know even though you are ill, dont give up going for your dreams, you may need others help to get you there, but still aim for them! I always say it if it was not meant to be it wont happen, things happen for a reason and some day we figure it out and why, it always works out some how. I know you will be successful and get what you want, it can happen, maybe not on your own now, but it can happen, those who love you will help you get there! Best of luck.BrendaKate Quote Link to comment Share on other sites More sharing options...
joiedevivre516 Posted April 16, 2006 Author Report Share Posted April 16, 2006 It's so nice to see these new responses and to meet so many wonderful new people! Thank you!! I hope to be able to talk to you all more as I continue along this new and challenging journey.Thanks for your support!Kate Quote Link to comment Share on other sites More sharing options...
sstephan Posted April 16, 2006 Report Share Posted April 16, 2006 Hi Kate,I am new to the forum also and got my diagnosis not too long ago. I have a very long story as well and went through endless tests and times thinking I was just going crazy. It's weird because when I am feeling well I forget about having an illness and I think that life will just go back to normal. But then I will get sick again and remember how bad I do feel at certain times. It seems to go in cycles. I know what you mean about wondering about the future. Please feel free to email me at anytime. I am thirty now, but first was diagnosed with just autonomic dysfunction when I was 18 too. (through a positive tilt table test!) Thinking of you, Susan Quote Link to comment Share on other sites More sharing options...
Guest sonotech Posted April 16, 2006 Report Share Posted April 16, 2006 Hey Kate,I sent you a "personal message". So if you havent found where that is, its under "My Controls" on the top of your screen. Laura Quote Link to comment Share on other sites More sharing options...
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