New and saying hello...

[danish]

Hi, everybody. I just wanted to introduce myself because I feel like I practically know some of you from reading through the posts, which makes me feel slightly stalkerish. My name is Sarina and I?m 15 (much younger than most of you, I know). As of about a month ago I?ve been tentatively diagnosed with pots, ncs and mvp, but I?ve been sick on and off since about 6th grade. My main symptom is pretty debilitating fatigue, although there is other stuff--big things like fainting (or what looks like a seizure) when I stand up or stand for too long, and little things like a very low temperature. It?s been really tough with doctors (one even went so far as to suggest that my mom was drugging me) so I?m relieved to finally not be told that I?m depressed/ anorexic/ a hypochondriac. ?Unknown ailments? never go over well, and I was kicked out of my school last year for missing so many days and fainting during the school day (despite getting straight-A?s), and I?ve found friends to be slowly dropping. Basically, I?m still in that state of ?see, something really is wrong with me!?. I also joined DYNA kids, but everyone here seems to be so supportive of one another. Anyway, this is just my little introduction to the neighborhood.....

~Sarina

[Eillyre]

Hi Sarina!

Welcome to the forum -- sorry I just missed you earlier. I was in the middle of peeling an orange for breakfast, but had to lie down and put my feet up.

I'm so glad you were able to find us! Sounds like this is the place for you! I joined about a month ago and have been so blessed by the love, compassion, encouragement, and information radiating from all of the other members.

I'm so sorry to hear what's been going on in your life -- I can identify with you on a number of points. I sympathise with the trouble you've had getting the doctors to believe that there is something medically very wrong (absolutely appalled by the suggestion that your mom was drugging you ) -- my neuro was very caring and helpful, but it took my cardio half of forever to get the picture! Glad to hear that someone is finally looking into the realm of dysautonomia for some solutions.

On the friend front, I'm sorry to say it's happened to me also, to some extend. I try to keep in touch with my friends, but most of them are away at college or in ballet companies. They are preoccupied by work, studies, and all of the friends they have at their own locations, and end up sort of drifting away. I think some of them just get a bit tired by my perpetual inability to function in normal life -- it's easier (and at times more fun) for them to get out and do exciting things with healthy people. Some of them feel a bit guilty being able to do things that I can't anymore, so they don't know what to say to me. Ignorance also has its fingers in the cookie jar -- one girl insisted that the origin of all my troubles was just not eating enough. However, this is only the case for some of my friends more "on the fringe" -- my very close ones are truer than ever and come up with different ways to accommodate my limitations.

And I've even been making new friends who can completely sympathize with the struggles I encounter -- DINET forum to the rescue! If you need a smile, hug, advice, or just a place to vent, you can always count on us! Welcome to the family, Sarina!

With love,

Angela

[Gena]

Sarina,

I'm so glad you finally got a real diagnosis and that you found this forum. You seem so well spoken, mature and wise beyond your years! I think dealing with an illness sometimes has that effect on us! As Angela said, this forum is WONDERFUL! You will find this one of you favorite places to visit online. I know I do. It's the one place I know where everyone truly understands what your going through and cares deeply about what happens to you.

It must be so difficult to feel isolated from your friends at such a young age. I have had friends drift away as well, but I have made some new friends in my town recently and I have my husband, my mother and my grandmother who offer great support and friendship as well. (Although, it's hard for them to truly understand what I go through each day--they do mean well!)

I hope you find the right meds and treatment to help you function better and to ease your symptoms. Sometimes it takes a while to do that. I'm glad you joined DynaKids, maybe you'll find teens with dysautonomia in your area that you can get together with from time to time.

I love your japanese proverbs and your name by the way. Both very beautiful!

Hugs,

Gena

[geneva]

Sarina, welcome to the site! It IS a warm and friendly place to come and you will find many new friends here who care about you. I know at 15 it must be so hard to have friends drop away but the truth is that we find who our best friends are during times of hardship.

I am glad that you were able to get a diagnosis after such a long period of time...unfortunately, it happens all too often. Have you found medications that are helping? It is usually trial and error in the beginning but I hope something will help you feel better. I remember the horrible fatigue and am so sorry that at 15 you are experiencing it. Just remember that the more you can let your body relax and have a chance to improve/heal itself the better it will be. We all go through periods of giving in to the need to rest and other times trying not to let the illness control what we do daily. It is a difficult balance to maintain but the best advice I can give you is to listen to your body...it WILL tell you what you need.

So glad to have you onboard!

[briarrose]

Sarina

Welcome and thank you for joining all of us!

I would have to agree with the others that you do see very well spoken and years ahead of your age

I'm truly sorry about your friends, it's their loss; you seem like a very intelligent, lovely girl.

It's such an early age to learn about the harshness of health care and others. Try not to let it make you bitter but learn from their mistakes and ignorance. It's tough, especially for me to say

Are you getting good health care now? What are you doing for school since you were kicked out last year?

Just let us know what we can do to help.

Steph

[MightyMouse]

Welcome to the forum Sarina. We're practically neighbors. I live in southern NJ, just across the bridge from you. I'm also a Ph.D. student at Temple U.

Any chronic illness will test friendships and relationships. It permanently changes the dynamics. You will find, though, that those who stick with you for the long haul will be your most treasured friends in the truest sense.

Nina

[Guest Julia59]

Welcome to the forum Sarina! You'll find loads of support between Dinet and Dyna Kids. This is a wonderful group that has gotten me out of many depressed moods.

You will learn many lessons that will make you wise beyond your years. One of those lessons is who are your true friends. I know it's very difficult to lose friends----but in reality those you lost were never really there if they couldn't hang on and believe in you. You will make new friends----and they will truly respect what you are going through. There is light at the end of this tunnel for you.

You sound like a very mature person for your age, and i'm sure this will be a blessing to help you cope with the new changes in your life. Remember to still be in the moment and relish in the good times young people have. There will be times you can't do the things you used to, but when you can----enjoy every moment.

When I was you age I didn't notice any symptoms other then the IBS (irritable bowel syndrome), and a teacher noticed I had an unusually fast heart rate. I had all kinds of GI testing for my Gut, and the tests always showed negative. As time went on my Docs and my family never took any medical complaints seriously from me.

Now that you know what is going on with your health, you can come to visit us and the Dyna Kids. You can educate yourself on the new challanges you will face-------this is the best place to do it ----with never ending support.

Blessings to you,

Julie :0)

[Guest tearose]

Welcome Sarina! I have to get my son from school but I just had to say a quick hello! You picked a great neighborhood! I remember that feeling "see, there IS something physically wrong", when I finally had the diagnosis. I hope that you will be able to work your way through this feeling support here! As you already know you will be in good company. Looking forward to hearing more from you. best regards, tearose

[Michelle Sawicki]

Hi Sarina!

Welcome to the forum! It's good to hear the docs have finally figured out what is going on with you and no longer think your mom is drugging you . There are a lot of great, supportive people here. Glad you stopped the stalking and finally joined us. LOL!

Michelle

[danish]

Thanks so much everyone for being so welcoming. Like many of you have said, this has made me realized who my real friends are. My 4 or 5 best friends have been really great and visit and are supportive--but many other people I considered to be friends, obviously, well, aren't. Which is ok, just frustrating.

Steph-- I was "asked to leave" a private prep school who claim that sick students don't fit with their image. I started this fall at public school, and besides having to go through that adjustment I was at an all-time worst healthwise. So, my doctor suggested I go homebound which, for lack of a better word, *****. I hope to go back to school soon even if it's just for one or two classes.

Healthcare-wise I was diagnosed at the diagnostics center at CHOP (children's hospital of philadelphia) during my second try there. The doctor I saw was great and seemed to know a lot about dysautonomia, but he doesn't continue to see patients. My neurologist hasn't been very helpful, and I just started seeing a cardiologist who is a perfectly good doctor but has never had any experience with this. There are doctors nearby who deal with autonomic dysfunction, but the problem is none of them seem to treat patients under 18.

The cardiologist put me on provigil for the fatigue; I'm not sure it's doing much help. He wants me to take something for the changing blood pressure, but has to do a couple cardiac tests first to make sure it's ok.

Wow, i just realized how long that was. Anyway, again, I appreciate the warm welcome.

~Sarina

[danish]

p.s. Gena thanks about my name! Nina, my best friend's dad is a law professor at temple...go figure.

[DancingLight]

sarina!

welcome, welcome, welcome. i kinda did that 'stalking' thing too for a while before i officially joined! i am fellow pennsylvanian...but you know...you're closer to nina than to me! gotta love how everything is seems so far apart in PA...

anyway, i agree with everyone's wonderful comments so far. i am so glad that you have us and dynakids now. like everyone else, i rely on this site so much to keep me going...especially at down times.

you are so very wise, articulate, insightful, perceptive, and mature for fifteen. is it just me or are kids growing up so much faster these days? i know i wasn't that mature at 15!

when i was 15/16 i also had a 'mystery illness' and although my mom wasn't accused of drugging me (???!!! how did a dr. ever come up with that????) she was accused of enabling me. and i was also accused of all of the psychological and eating disorder things. also, i was told that i was avoiding school...!!!!...and i LOVED school like you do and was a great student and really involved in activities. now, looking back we really didn't know what ever was going on but i missed so much school and would only be able to go in for a class or so at a time. i wonder know if it was early dysautonomia stuff?

man, i had a point there, what was it? oh, it was just so awful dealing with people's perceptions of me b/c they didn't know what was going on with me and i didn't either. your post took me back to that time and the struggles we had with drs. and all that...and i just felt your pain so intensely.

like others have said, you will find out who your true friends are. i think at your age it is hard too b/c you may be the first 'sick' person they have had to interact with. 4 or 5 friends though...that's a lot, girl! so hang on to them! you may find that even though you are the more tired one, you will have to reach out more often but in the end it is worth it. sometimes my friends don't call b/c they 'don't want to bother me' or something...but i persist and then it works out. also, you are very mature for 15, and illness makes you grow up even more...so sometimes that makes it hard too b/c your friends might not be in the same 'place' as you emotionally.

i cannot even believe what happened with that private school! grrrrrr....

thank goodness you are at least on the path to dianosis and treatment. you are right how good it feels to be able to say 'see, i really am sick, there really is something wrong with me.' but, i hope you can soon find a doctor to treat you. it's amazing how difficult that can be!

well, if you've been stalking a lot here......you'll know i'm always off to get a bite to eat or dinner or nap! so, this time, i gotta go get me some dinner!

thanks for introducing yourselves to us. and please keep checking in.

i am sorry that you have to deal with this much illness and challenge at such a young age. it is just not fair! i hope that you will find treatment soon and improve slowly, but surely.

hold on to your intelligence, strength, wisdom and courage when you are feeling beaten down by doctors or 'missing in action' friends. k?

emily

love your avatar....you young people are so computer savvy! i still haven't done mine even with nina's offer to help!

[Ernie]

Hi Sarina,

Welcome to our nice family! I am sorry you have to deal with this disorder at such a young age.

I was not aware that a school could make you leave because you are sick. Maybe the regulation is different for private school but you could always check it out.

Ernie

[DawnA]

Welcome sarina! It is nice to have you here. Not only are you mature beyond years, you seem very bright. I admire that you have so much knowledge regarding your illness. I have a daughter who is 13 with POTS. She is not affected very bad and is doing very well these days. I do not even think she knows how to spell dysautonomia. I am sorry you are having a difficult time with POTs. I hope you get the support and knowledge you need from this forum.

dawn

[blackwolf]

Welcome Sarina! This is indeed the place to be, everyone here is supportive and caring. I'm sorry anyone has to go thru this, but to be so young is just not right.

I am also sorry you have to find out this way who your friends really are. As to school, I'll just say how unfair.

Again, I would just like to say welcome.

Blackwolf

[Melach]

Hello,

I too am new at this forum, and found it when I wasn't even looking! Maybe I will start a new topic like you did in order to introduce myself. I just find it so sad that you have to go through this just at the time when most children are really gaining independance. Hopefully the new medication for the blood pressure fluctuation will work for you.

Best regards,

Avital