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Feeling down tonight.


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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..

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Bless your heart. I wish that I could come and give you a very big hug. You are NOT a burden. It is really heart wrenching to read something from a child's perspective. I don't even know what to say. But to expect you, at 15, and in the midst of battling this illness, to provide for yourself is unreasonable to say the least. Please seek some help- it is great to be among us "virtual friends" but you need the real thing right now. Hang in there!

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Let me just say that from the first time you posted, I thought you were one amazing 15yo! Sorry you don't have more support from your mom, but if anyone can get through this on mostly their own, you can! Hang in there kiddo!

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I don't know what to say, other than sending you a ciber hug!

Here are some awesome thoughts for you to dwell on tonight...

1) You know it's PANDAS! Score! You know it's not you, it's not your fault, and it's something that can be treated.

2) It looks like you are getting good treatment, and are working on diet, supplements and everything that helps

3) Your mom has been with you on this long road... and she'll be there for you still (maybe she was just having a bad day today!)

As a PANDAS mom I can tell you some days I just want it all to go away, I sometimes feel like I don't want to do this anymore, but here I am :angry:

You sound like a someone with great inner strenght and that will see you through this. Have faith and be patient, things will get better.

 

Isabel

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Your post brought me to tears. Thank you for sharing your feelings here and feeling safe to do so. I hope in time your mom will understand more and be more supportive to you.

 

Was the issue with the food because gluten free food can be so expensive or were there issues there before going gluten free? I know we have found some really good prices at super walmart which has a gluten free section now and you can find some good deals on stuff you may like off of amazon.com and buy in bulk.

 

Good luck to you and hang in there.

 

Susan

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I have the opportunity to talk with college students often and I ask how many would like to relive their teenage years - I think I've only had 1 or two say they would like to relive them... and the people I am asking did NOT have a chronic illness to deal with during the teenage years.

 

Being 15 is wonderful in some ways, but can also be so difficult in others. Kids who have additional burdens of illness or family problems have to find some way to cope with them, and the ways that are chosen are not always real healthy in the long run. One way that kids cope is by growing up faster than they should, and taking on more responsibility than they are ready to take on - but they do it anyway and they usually plug along and do a great job - on the outside. But... on the inside they are hurting. Over time, people come to expect more and more of these kids because it looks like they are doing such a good job.... but this is really not healthy in the long run.

 

I do not know if you are seeing someone that you can talk to on a regular basis. I hope you have a professional that is helping you... someone who can help you sort things out and get the help you want and need. If you do not have someone, perhaps your school guidance counselor could help find someone. If your school has a social worker that would be good as well. Most guidance counselors and social workers have some summer hours. They may also be able to connect you with some social services agency to help with your medical needs.

 

Please keep us posted on how things go!

Edited by kimballot
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Just want to let you know that throughout this fight for my child, I have considered this a fight for all of the kids dealing with this illness. I can tell by how all of these parents are actively willing to go above and beyond to help each other find answers that they also believe this to be a fight that is not only for their children but that we consider all of these children including you as "our" children! That is why so many continue to post on here even though their child is doing quite well. That is why we are all fighting for the research grant. That is also why some of us have volunteered to give blood and include our families in studies in which we will never get the results of. You are loved by all of us and you are one of "ours", so as for me...when I am searching and trying to find answers, please consider my fight to be for you also!

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I too was brought to tears upon reading your post. First of all, you are an amazing 15yo! I wish you had the support that you so deserve. As a parent I know I don't always do this PANDAS thing right. I still get frustrated some days with my DS' behavior towards his brother and I've lost my patience. I also really cringe when I think back to some of the things that I said or did before I ever knew it was PANDAS. I can't change any of that but I can try to remember and try harder in the future. Hopefully your mom will realize that she let her frustration or anxiety over money get the better of her today and that she said some thing she shouldn't have. I don't know anything about your situation but even gathering info from your post it sounds as though she does make some effort (going into your school to talk with teachers, researching about PANDAS, etc) I hope that she will get herself together and support you in the way you deserve to be. (((hugs!)))

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Thank you all. When I posted this I felt really really alone, but I feel better now thanks to these replies. The more I come on this forum the more I realize that even if my family isn't as reliable or informed as I would like them to be, there's always someone who understands on here.

Thank you for putting a smile on my face. <3

 

I don't know if asking my Mom to get an account on here would be good or bad. On one hand, it might help her get more interested or at least help her learn about what it is that I really have, but on the other hand it would be a huge disappointment if she made an account & didn't really do anything. She makes jokes about how often I'm on the computer, but she doesn't realize that if I'm on the computer.. I'm on here. Helping & getting helped. When I come to her with new information, like the Stanford paper finding the Strep immunity associated with Narcolepsy, I don't think she really grasps just what a big deal it is, even if just to me. She knows I have P.A.N.D.A.S., obviously, but beyond the generic "antibodies attack the brain & give patients tics & OCD" part, I don't think she knows nearly as much as she could. She definitely doesn't understand how it effects my moods. This morning when she wasn't home I tried to fry an egg. It didn't go so well, & by the time that the third yolk broke I couldn't stop crying. When I told her about it she just said "Why? That's weird..." & chuckled. I don't know how to explain to her that I'm more than just a little "off" when it comes to cognition.

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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! :unsure:

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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 : )

Edited by LLM
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I think it's terrible that you don't feel like you're getting the support you would like from your mom, but remember, there may be more going on that what you're seeing. I remember when I was a teenager/young adult I focused on all of the things that my mom wasn't doing for me, that I never really saw what she WAS doing. Things like working a job she hated just so my parents could afford to send me to the private school that was best for me, taking a second mortgage out on the house to help pay for college and an internship abroad. My mom never advertised she was doing these things - I didn't learn about them for many years later. Yes, there were times when she complained about money and how expensive things I wanted were, and of couse I hated her because she didn't "understand" - but I had no idea how much they were sacrificing for me either. And parents are human - they can't always keep things bottled up.

 

But another thing to think about - we all deal with having a sick child in different ways. Many parents choose to get actively involved in finding a cure and helping their child in anyway they can - like those of us here. There are also many parents who are in denial as to how sick their child may or may not be - and if they don't think about it or focus on it, it can't really be that bad. It's heartbreaking for a parent to see their child suffering - and everyone reacts in a different way. If you haven't already - read the story "Welcome to Holland" - it gives a perspective on what us parents are dealing with.

 

You seem to be a very bright, intelligent, resourceful young lady. It's been a joy to have you on here sharing your perspective. Your feelings toward your mother and her reaction are valid, and something worth exploring with her. If you haven't already, I would sit down and have a talk with her - a real talk, TV off, not while doing dishes, cleaning the kitchen etc. Just sit down, one on one and tell her how you're feeling. Stay calm, and try to be objective. If you start attacking her saying "You always do this, you never do that" she'll go on the defensive. A counselor once taught me a great trick for communication - try to express your feelings using this formula "I feel _____________ when you do ___________ because _______________". It's worked wonders for me and really helps keep raw emotions from flaring up.

 

Good luck!

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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.

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