galatea Posted February 22, 2014 Report Share Posted February 22, 2014 June, sorry for the misunderstanding, I didn’t mean to say that you should lower your expectations for getting better, the prognosis for teenagers is very reassuring, of course she should expect to get better! I meant it helped me in terms of day to day experience, not feeling bad about what you might be missing out on in the present. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 22, 2014 Author Report Share Posted February 22, 2014 Galatea,I understand, don't worry. I didn't take offense. We are lowering some expectations already unfortunately especially regarding school. We keep thinking she'll go back but she doesn't. Sigh.June Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 22, 2014 Author Report Share Posted February 22, 2014 Rachel, I will continue to look into the IEP. But the 504 has all those elements already. I just have to research it more.June Quote Link to comment Share on other sites More sharing options...
Christy_D Posted February 22, 2014 Report Share Posted February 22, 2014 Sad to say, my son was also in the gifted program and had to take some easier classes to help get through from the brain fog. He did graduate on time with his class and Magna Cum Laude. His counselor said she never had a student graduate on time when they did not attend school for four years. That was because of his competitive side, not graduating on time would mean he 'lost the game' in his eyes.I will say, that until last June, I wasn't seeing a light at the end of the tunnel. He had been homebound and mostly bedridden for over 4 yours. Then, suddenly, a medication that finally helped because of the full diagnosis. So, even when it seems very dark, just keep up hope that the light is there...you just can't see it yet. Quote Link to comment Share on other sites More sharing options...
looneymom Posted February 22, 2014 Report Share Posted February 22, 2014 Hi JuneHope things are a little better this morning. The weekends tend to take some stress away around our house. I was reminded yesterday that my boys only had 13 weeks of school left.Your daughter will always be gifted and she can always take those advanced classes when her body decides to cooperate. However, I know that it's hardto get this through to a teenager. Hopefully you and her therapist can help her see this kind of stress may make her worse and that it's okay to give the body a break. Socialization is a big thing to teenagers. As long as she can function in the school environment, try to keep her there. I had no choice with my son because of his medical condition.I do hope you can get her on an IEP. When you get close to the end of a school year, some schools do not want to write an IEP because it's too much work. However, I can assure you that your rights are protected and so is your daughters education. Have a good weekend.Rachel Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 22, 2014 Author Report Share Posted February 22, 2014 Rachel- Thanks, yes my daughter is in the same boat as your son. She really can't attend school. She has been there about 2 maybe 3 weeks altogether this year. I really don't know what to do. I am planning on asking about the IEP on Monday. I will force them to do one before 9th grade. I think that is important.ChristyD- thanks for the inspiring story. I will hope such a thing happens for us and we find something that really helps her get better. Loonymom-thanks for all the info. I read about it a lot last night.June Quote Link to comment Share on other sites More sharing options...
Lethargic Smiles Posted February 22, 2014 Report Share Posted February 22, 2014 I think connecting her with kids her age with POTS would be really helpful! I'm sure she feels really alone. In a way, you could think of her as mourning a death, the death of the life she thought was guaranteed to her. That's how my Mom phrased it to me and it was very true.Could you find blogs of positive people she could read to see their lives are not over? Here is a really great blog post about life not being over due to chronic illness: http://arainbowatnight.com/2014/02/21/coping-with-chronic-illness-your-life-is-not-over/ Quote Link to comment Share on other sites More sharing options...
Lethargic Smiles Posted February 22, 2014 Report Share Posted February 22, 2014 I'm friends with a POTSie who has had POTS since age 10 and is now 15. She does homeschooling and it takes up much less time than regular school. The negative part is, you lose that socialization. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 22, 2014 Author Report Share Posted February 22, 2014 Jackie,Thank you for writing. I will take a look at that blog. Yeah, she just perks up so much anytime she does go to school and sees her friends. I couldn't take that away from her unless it becomes really clear that can't go at all. Then I will have to adapt. But I can't give up yet.June Quote Link to comment Share on other sites More sharing options...
gjensen Posted February 22, 2014 Report Share Posted February 22, 2014 I think connecting her with kids her age with POTS would be really helpful! I'm sure she feels really alone. In a way, you could think of her as mourning a death, the death of the life she thought was guaranteed to her. That's how my Mom phrased it to me and it was very true. Could you find blogs of positive people she could read to see their lives are not over? Here is a really great blog post about life not being over due to chronic illness: http://arainbowatnight.com/2014/02/21/coping-with-chronic-illness-your-life-is-not-over/ I agree. The isolating nature of this illness is one of the larger challenges for me. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 23, 2014 Author Report Share Posted February 23, 2014 Thanks to everyone here. She is feeling better mentally and only today also physically. I am happy she will finally get tested for Addisons Monday. I want to get that off the table. But it takes 3 weeks for the results. Crazy. But now I am feeling more secure in her mental state. But she is always happier on the weekend. I guess adolescents bounce up and down.June Quote Link to comment Share on other sites More sharing options...
gjensen Posted February 23, 2014 Report Share Posted February 23, 2014 June, with this, I bounce up and down. I will go through spells where my symptoms are more manageable. My outlook perks up, then I get a flare and I can get down. This whole thing is up and down for me. I am constantly looking for the brighter side. It helps moderate my lows. This is tough stuff. I do not know what it would be like for a 13 year old young lady. In fact if not for a supportive wife and a few good sons, I do not know what it would be like. One day she is gong to be better, look back, and be thankful for the mother she had through a time like this. Quote Link to comment Share on other sites More sharing options...
pianoman Posted February 23, 2014 Report Share Posted February 23, 2014 Hi JuneFlower,I am so sorry to hear you, your daughter, and the rest of your family are going through this challenging time. There are so many layers of chronic disease to cope with, it's ridiculous. It is like getting sick, abused, bullied, rejected, depressed and anxious all at once. It feels like a trauma forever sometimes.I became medically challenged at 8 and diagnosed at 9. Completely normal, and then just the opposite. Now I am nineteen, and feel it is almost more difficult to cope with now. I think it is because I always hang on to the "normal" parts of my life. The everyday things that I can do that everyone else can. I always hung on to this, and even in general had a positive attitude. Always just looked at what I had and what I liked, and kept moving forward. I believe the perspective I had was and is a good one, but it also has its sense of in-denial. Esp. because life's harder to avoid now with more adult transitions coming my way. (fun, fun, fun.... ) Trying to figure out your future is tough in general, but even tougher when you have a condition. And the thoughts and frustration always go back to the condition part. "I have to put extra steps and time into my health- I can't deal with all this right now- too frustrated- only me- WHY is this happening to me?" Something that really clicked to me one day and brought a crap load off my back was: Yes, this is happening to me. It is unfair, and unclear. But if you like to life, and lives, these things don't just happen to one. I can't think of one friend in my life that something tragic and incredibly unfair hasn't had to go through. Yeah, sometimes its like, man up! that ain't nothing! But sometimes it can be just as heartbreaking. I also get how it is more than one struggle. I was in OCD rituals for 7 hours a day, and worked really hard (and working hard) at CBT (Cognitive Behavior Therapy), to get in under control. Sessions twice a week with doing a lot of reading homework and strategies, to like twice a month. This was also when my mood was at its worst. I would def recommend therapy to everyone(I don't care who!!!! It works, I was a non-beliber). Just make sure to find the right fit. It sounds like your on a great track with that(and a cat!!!!!).Some other folks mentioned what I am about to say, but I think it is CRUCIAL!!!! Have your daughter find a craft. Something she is good at and can grow with in positive ways. Mine is music. It's everything for me, and now it is looking at my major for school. Wouldnt even have touched it if hadnt got ill, but my sister did it and i needed something to do quick. Yes school work is a good option too becuase it is productive, but music provides the best of all worlds in my humble opinion. Also, social time. Esp. out (if can be) in a group setting with people she likes. THIS has really helped me a lot mood wise. Idk what it is exactly, but its prob the combo of: being out, good company, and fun.I wish the absolute best to you and you family! My thoughts are with you! Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 24, 2014 Author Report Share Posted February 24, 2014 Gjensen & Pianoman,Thank you for your encouraging words. I hope her mood gets better. It seems to be up & down. At drs right now for Addison's test finally. But results take 3 wks! Going to her psychologist today .June Quote Link to comment Share on other sites More sharing options...
looneymom Posted February 24, 2014 Report Share Posted February 24, 2014 Hang in there June. Waiting on these test results is no fun. I have had to wait as long as 8 weeks and the holidays can really mess that waiting time up. Take one day at a time and do what you can. When you think things are bad, just remember the worst of the worst. With my son, this brings me to my senses pretty quickly. I don't ever want to see my son so weak the he cannot sit up by himself.It does help to keep a journal so you can look back on these things and sometims it can help you figure out triggers that make her POTS condition worse. This is the reason why I blog. I am working on some up dates and should be releasing some more blogs this week.Hope today is great and give your daughert a big hug. She can do this but she will need support.Rachel Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 24, 2014 Author Report Share Posted February 24, 2014 Rachel,Yeah I guess things could be worse. But things aren't good . Lots of stress on the family. Lots of misunderstanding with school officials. June Quote Link to comment Share on other sites More sharing options...
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