Feeling down tonight.

[bgbarnes]

I have yet to post something like this, but I'm feeling particularly hopeless tonight. I've been on a gluten free diet for about two weeks now that has worked miracles with the stomach pains that I've had for years. Today, after a trip to the grocery store, my Mother informed me that I'd have to be paying for my food from now on. I'm fifteen... I have no job & couldn't get one if I tried... I'm sorry that my appointments & pills have cost you so much. I'm sorry that you have to come into school to explain my disease to my teachers year after year. I'm sorry that I can't control my moods. I'm sorry that me finally reaching out to get REAL treatment after five years is such an inconvenience. I'm sorry that I am such a financial burden, when your cigarette habit & $120 jeans obviously aren't. I'm sorry that researching P.A.N.D.A.S. takes more time than you have, time that's mostly occupied by FarmVille & soap operas (which are so much more important). I'm sorry that I Tivoed Mystery Diagnosis for you when I knew you were too busy to spend half an hour watching something I was so happy about. I'm sorry I'm sick, Mom.

 

As much joy as this forum has given me, seeing all of you parents fighting so hard for your children makes me sad every now & then. I don't mean to bring the mood down or be pessimistic, but I just don't know anyone who would understand..

I am sorry you do not feel you are getting the support at home- know you have it here. I agree with many of the other posts- I don't know if ANY 15 year feels supported just be the nature of being 15. That being said- keep venting here- if you are able to manage PANDAS in the amazingly mature way you are at 15 just think about what you will be able to accomplish in life. It is not what is holding you back but what it is preparing you to be able to show the world. You are an inspiration and such a resource into the brain of our kids. Thank you for sharing your feelings here!

Brandy

[Kayanne]

Remember, for every minute we're on here, typing and reading, we're not paying attention to our own families : )

 

This is so true!!!

 

I want to say that I agree with all of the previous posts...keep your head up. I also want to say, that any PANDAS parent that I have reached out to on this forum has been MORE THAN WILLING to speak to me on the phone. Perhaps a phone call between your mom and another PANDAS parent may help bridge the gap between you and your mother? Please feel free to contact me by pm, if you would like any help at all....my experience has been with a 6yr old PANDAS daughter.

There are many on the forum who have teenagers going through this...perhaps a pm to one of those parents?

 

I also want to say that it is great to hear your perspective on PANDAS.....so many times we parents are wishing we really knew what was going on in our child's brain, and they just are not capable of letting us know!!

 

Good Luck, I will keep you in my prayers.

 

~Karen

[EmersonAilidh]

Obviously, in cyber space, we can't know your mom or understand the situation. I know that outsiders tell me what a "wonderful" advocate I am for my son, how lucky he is to have me as his mother etc. But if you asked my son, he'd have no trouble telling you about all my faults and shortcomings. Not in a cruel way, but he lives with me. He sees me at my best and my worst. He has plenty of examples of when I fell short of his needs or expectations. What you see on this forum is us parents "at our best" - we edit out the parts we don't want others to see. The times we yell instead of being compassionate, the times we allude to how much money we're willing to spend on doctors but fail to mention how we told our kids no, we couldn't go to mini-golf or six flags or eat out tonight because we were spending tons on medical bills. So in defense of your mom, you are only seeing the sides of us we want the public to see.

 

I agree with all the other posts and do wish you felt more supported. Teen years are rough and even the most well-adjusted, beautiful, smart, "popular" kids feel isolated and lonely on the inside - it's part of growing up unfortunately. But even adults feel this way, and it's possible your mom's reluctance to learn more could be coming from fear, not a lack of caring. Some people are afraid of learning about things they can't control. They want authorities to treat and make it go away. Or maybe trying to read something medical makes her feel stupid or incompetent. Maybe it makes her feel like she's failing you. Who knows. Just try not to interpret the fact that she doesn't respond the way you want her to as "not caring". Maybe she's doing the best she can, tho that may not be good enough (and maybe that's her worst fear come true).

 

My son too struggles with "cognitive fog" and it brings him to tears at homework time. It's taken me two years to learn to ask "are you giving me your best?' If the answer is yes, then that's all I ask, even if he's falling short by outsiders' standards. Try to ask your mom to give you her best, but realize that that may not mean she can give you everything the parents here "appear" to give our kids. Remember, for every minute we're on here, typing and reading, we're not paying attention to our own families : )

 

I've never thought of it like that. Thank you!

[EmersonAilidh]

Are you sure you're only 15? I'm starting to wonder. You sound SO intelligent, and years beyond your age.

 

In terms of your symptoms, what is the most troubling to you? What has your treatment done for you?

 

Please don't feel bad about not being able to cook an egg without breaking it. I can't either!

I've been having Narcoleptic symptoms for over a year no. If I lay down to sleep & I have no reason to force myself to wake up the next morning, I sleep twelve-sixteen hours everytime. Mostly just twelve, though. & I've only ever had pharmaceutical treatment (my Neurologist is doubtful of P.A.N.D.A.S.), but I can honestly say that it helped make my twitches a whole lot more manageable. I have been pill free for about half a year now though! I like that.

 

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

 

That story almost made me cry. Thank you for that. & I try to be understanding with my Mom as much as possible, because just like she can't imagine what I'm going through, I can't imagine how difficult it must be to be the parent in this situation. Every now & then, like yesterday at the grocery store, I just lose it though. Today I am better, & my Mom & I are about to watch TV. I'm gonna ask her to watch the Mystery Diagnosis with me.

 

not feel you are getting the support at home- know you have it here. I agree with many of the other posts- I don't know if ANY 15 year feels supported just be the nature of being 15. That being said- keep venting here- if you are able to manage PANDAS in the amazingly mature way you are at 15 just think about what you will be able to accomplish in life. It is not what is holding you back but what it is preparing you to be able to show the world. You are an inspiration and such a resource into the brain of our kids. Thank you for sharing your feelings here!

Brandy

Thank you! This forum has given me the "friend" to talk to that I've always wanted. Even if I don't really know anyone on here, it's so helpful just to have someone that I know understands in a big way. Talking to my friends often just leaves me feeling more "messed up" than before because they never know what to say, & I'm left just as confused as ever.. Only now I feel like a freak. But, that's changed since I got on here. <3

 

I want to say that I agree with all of the previous posts...keep your head up. I also want to say, that any PANDAS parent that I have reached out to on this forum has been MORE THAN WILLING to speak to me on the phone. Perhaps a phone call between your mom and another PANDAS parent may help bridge the gap between you and your mother? Please feel free to contact me by pm, if you would like any help at all....my experience has been with a 6yr old PANDAS daughter.

There are many on the forum who have teenagers going through this...perhaps a pm to one of those parents?

 

Someone pmed me about this.. My Mom won't get an account on the forum. I've asked her to & she's just flatout not interested. If I were to come out & say "Hey, one of the parents on the forum wants to talk to you." I can't imagine her reacting well. I don't think it's so much that she's not understanding because her coping mechanism of choice is denial, I think that she honestly doesn't grasp the true weight of what we're dealing with here. & I don't know how to make her realize that P.A.N.D.A.S. is SOOOO much more than what it says on Wikipedia! Haha. If I were to mention having vented on the forum to other P.A.N.D.A.S. patients, I can't imagine her reacting well. But thank you very much for your offer!

[saidie10]

I have yet to post something like this, but I'm feeling particularly hopeless tonight. I've been on a gluten free diet for about two weeks now that has worked miracles with the stomach pains that I've had for years. Today, after a trip to the grocery store, my Mother informed me that I'd have to be paying for my food from now on. I'm fifteen... I have no job & couldn't get one if I tried... I'm sorry that my appointments & pills have cost you so much. I'm sorry that you have to come into school to explain my disease to my teachers year after year. I'm sorry that I can't control my moods. I'm sorry that me finally reaching out to get REAL treatment after five years is such an inconvenience. I'm sorry that I am such a financial burden, when your cigarette habit & $120 jeans obviously aren't. I'm sorry that researching P.A.N.D.A.S. takes more time than you have, time that's mostly occupied by FarmVille & soap operas (which are so much more important). I'm sorry that I Tivoed Mystery Diagnosis for you when I knew you were too busy to spend half an hour watching something I was so happy about. I'm sorry I'm sick, Mom.

 

As much joy as this forum has given me, seeing all of you parents fighting so hard for your children makes me sad every now & then. I don't mean to bring the mood down or be pessimistic, but I just don't know anyone who would understand..

 

 

I am so sorry you are not getting support from the person who should be giving you unconditional support and love. I hope something changes for you soon. We are always here for you.

[3boysmom]

Obviously, in cyber space, we can't know your mom or understand the situation. I know that outsiders tell me what a "wonderful" advocate I am for my son, how lucky he is to have me as his mother etc. But if you asked my son, he'd have no trouble telling you about all my faults and shortcomings. Not in a cruel way, but he lives with me. He sees me at my best and my worst. He has plenty of examples of when I fell short of his needs or expectations. What you see on this forum is us parents "at our best" - we edit out the parts we don't want others to see. The times we yell instead of being compassionate, the times we allude to how much money we're willing to spend on doctors but fail to mention how we told our kids no, we couldn't go to mini-golf or six flags or eat out tonight because we were spending tons on medical bills. So in defense of your mom, you are only seeing the sides of us we want the public to see.

 

I agree with all the other posts and do wish you felt more supported. Teen years are rough and even the most well-adjusted, beautiful, smart, "popular" kids feel isolated and lonely on the inside - it's part of growing up unfortunately. But even adults feel this way, and it's possible your mom's reluctance to learn more could be coming from fear, not a lack of caring. Some people are afraid of learning about things they can't control. They want authorities to treat and make it go away. Or maybe trying to read something medical makes her feel stupid or incompetent. Maybe it makes her feel like she's failing you. Who knows. Just try not to interpret the fact that she doesn't respond the way you want her to as "not caring". Maybe she's doing the best she can, tho that may not be good enough (and maybe that's her worst fear come true).

 

My son too struggles with "cognitive fog" and it brings him to tears at homework time. It's taken me two years to learn to ask "are you giving me your best?' If the answer is yes, then that's all I ask, even if he's falling short by outsiders' standards. Try to ask your mom to give you her best, but realize that that may not mean she can give you everything the parents here "appear" to give our kids. Remember, for every minute we're on here, typing and reading, we're not paying attention to our own families : )

[3boysmom]

Obviously, in cyber space, we can't know your mom or understand the situation. I know that outsiders tell me what a "wonderful" advocate I am for my son, how lucky he is to have me as his mother etc. But if you asked my son, he'd have no trouble telling you about all my faults and shortcomings. Not in a cruel way, but he lives with me. He sees me at my best and my worst. He has plenty of examples of when I fell short of his needs or expectations. What you see on this forum is us parents "at our best" - we edit out the parts we don't want others to see. The times we yell instead of being compassionate, the times we allude to how much money we're willing to spend on doctors but fail to mention how we told our kids no, we couldn't go to mini-golf or six flags or eat out tonight because we were spending tons on medical bills. So in defense of your mom, you are only seeing the sides of us we want the public to see.

 

I agree with all the other posts and do wish you felt more supported. Teen years are rough and even the most well-adjusted, beautiful, smart, "popular" kids feel isolated and lonely on the inside - it's part of growing up unfortunately. But even adults feel this way, and it's possible your mom's reluctance to learn more could be coming from fear, not a lack of caring. Some people are afraid of learning about things they can't control. They want authorities to treat and make it go away. Or maybe trying to read something medical makes her feel stupid or incompetent. Maybe it makes her feel like she's failing you. Who knows. Just try not to interpret the fact that she doesn't respond the way you want her to as "not caring". Maybe she's doing the best she can, tho that may not be good enough (and maybe that's her worst fear come true).

 

My son too struggles with "cognitive fog" and it brings him to tears at homework time. It's taken me two years to learn to ask "are you giving me your best?' If the answer is yes, then that's all I ask, even if he's falling short by outsiders' standards. Try to ask your mom to give you her best, but realize that that may not mean she can give you everything the parents here "appear" to give our kids. Remember, for every minute we're on here, typing and reading, we're not paying attention to our own families : )

 

 

 

 

 

 

Very true and well put!!!

[3boysmom]

WELCOME TO HOLLAND

 

by

Emily Perl Kingsley.

 

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

 

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

 

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

 

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

 

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

 

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

 

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

 

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

 

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

 

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

 

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

 

 

 

 

 

Oh my goodness...that is beautiful! Made me tear up...so true!

[EmersonAilidh]

Haven't seen much improvement, but I did get her to post the Pepsi Refresh Voting App on her FaceBook. Tonight is "poker night" at our house & I am feeling especially introverted today so I've holed up in my room with a Smithsonian "Grow Your Own Crystals!" kit. Sorry for the random update. Just hasn't been a good past couple weeks & I still don't know what to do.

I sent her the list of supportive doctors that I found on here two weeks ago & she hasn't even called or checked insurance or anything. I think she's forgotten, honestly. I'm feeling hopeless. It's summer & I'm supposed to be having fun, but I find myself making excuses to stay in on the occasion that I do get invited to do something just because I don't. feel. like. being. around. anyone. When I do go see my friends, I can't bring myself to talk. I can't explain it. I've always been incredibly outgoing, I could make friends with anyone that came my way, & now I'm just terrified to even open my mouth around the friends that I do have. I don't know what it is. When I do talk, it's about something weird & everyone just stares at me. I went on a tangent about parasites the other day & almost cried when I realized everyone was staring at me. This is the first time in my P.A.N.D.A.S. journey where it feels like I've completely forgotten how to socialize. All I want to do is stay home & read or watch Discovery Health Channel.

 

I really am sorry for all of these discouraging posts, but (especially with this one), I'm just looking for advice. I just wanna feel better. :/

[dut]

I'm sorry I don't have any advice to offer but wanted to send some support and internet love. Perhaps others can give you some good advice on ways to approach your mom. Hang in there, life can feel very lonely at times, especially during your teens (if my aging memory serves me correctly). Does your mom know you feel this bad at the moment?

 

I hope you start to feel some relief soon....