What Should I Do :(

[puppylove]

Everything was rolling along fine with school this year until today. I take four classes- math, English, science, at home using homebound schooling through my highschool and an online history course. I was going to go back to school for the classes they don't offer homebound- PE, art, and Spanish. I can't. My doctor told me not to because he I'm retaining fluid, and really I can barely manage the classes I have now considering how bad I feel. My counselor said I'm not allowed to only take four classes on homebound much longer- it's supposed to be short term and know the exact date a student will come back. Well, POTS is not short term and as you guys know there's no way to know when I will come back. She also said I wouldn't graduate for two years after I am supposed to at this pace. It's not really my main concern right now, but it makes me sad. I was supposed to graduate with all honors classes not graduate two years behind! And the last thing is my doctor is on the verge of abandoning us because we "never listen" to him. Many of the meds he has given us I couldn't tolerate and had to stop. He is the one who signs the school papers for me to get any kind of homebound schooling. I'm not really expecting anyone to know what I should do. This is just stressing me out so much and making me feel 100x worse.

[rspry]

Ohh try not to stress too much.. i know its hard not to when all that is going on but it really will feed your pots cycle. I have a hard time with some doctors that want me to just be fixed already or something.. or get irritated when I don't tolerate medications; so i know how you feel there. I'm currently in classes, but I'm in my 3rd year of college and they are online. Some days i don't even feel well enough to do work on there. Do you mind if I ask where you live (State) and if you are on disability? If you have grades in the honors program you may be able to take college classes online and Duel enroll.

[Shiner Kitty]

I hope someone else can give you some advice about what to do. That doesn't sound fair to me, though. If you aren't able to attend school due to a medical condition, they should allow you to take all of your classes at home, but I don't have any experience with this. Don't be too hard on yourself about graduating 2 years behind. You're doing the best you can.

I do understand how you feel. I was taking Honors classes in college, but I got so sick that I couldn't ever complete my degree. I tried going just part-time, but that didn't work out, even after dropping out for awhile. The last college classes I took years ago, the instructors said that if you missed more than 2 classes or were late more than 2 times, your grade would automatically be reduced to a 50% F! I was so sick that I missed 2 days right away, and it would've been nearly impossible for me to always be on time. I'd already had problems at another college where I was told if I was unable to take the test when others did, my make-up test would be much harder than everyone else's. I was also told that my tests would be oral while the others took written tests. I had severe cognitive and memory problems that would've made oral tests too difficult for me. Yes, they were probably violating ADA laws, but I didn't have the strength to fight with them. All of the stress of college severely affected my health. I've been unable to work due to POTS and my other many medical conditions for 18 years, and I had to give up my college and career goals.

Hopefully, you will be able to make all of your dreams come true, even if it takes you a little longer than others. In my case, I pushed myself too hard trying to be "normal" like other people. I think if I'd slowed down when I was younger (including in high school), I might not have gotten so much worse. One semester, I took 5 college classes, including 3 Honors classes, and I was trying to maintain a 4.0 gpa. I was trying to make up for lost time, and it was way too much for me. I should've only been going part-time, and as hard as it may have been for me, I should've asked for accommodations and accepted less than perfect grades. I didn't have my POTS diagnosis yet, but I had been diagnosed with Fibromyalgia and some other things. I just knew I was very sick, and I didn't know all of the reasons why. It would've been better to have at least finished the degree, even if it wasn't up to my own strict standards for myself.

So, my point is, don't push yourself too hard like I did trying to be like the other healthy students. It's better to do things at your own pace, and only as much as you're able to without exacerbating your condition. People treat us unfairly and they don't understand, but I think they should have to make accommodations for you. I hope others have more experience with homebound schooling and will be able to help you.

I also hope you will be able to find a supportive and understanding doctor soon. I've also had problems tolerating meds.

[Christy_D]

Your counselor is mistaken. My son has been on Homebound for 4 years now. He does not attend school. He does take some on line classes mixed with homebound. He took some on line classes over the summer to make up missing credits. As far as I know, there isn't a minimum number of classes you have to take. His school also gave him PE credit for physical therapy he did and for water jogging at home. Check to see if your school has an alternative way for you to complete PE. We just had to log his time and when he reached 60 hours he got .5 credits of PE. Then the Mayo sent a letter that he completed 60 hours of physical therapy.

My son took Spanish on line, as well as art, music appreciation and speech and debate. Look to see what on line classes you can take for your electives.

[puppylove]

I live in VA. It seems like the public school system here is way different than in other places because they have a lot of stupid rules here. Unfortunatley, I'm not allowed to get credit for the exercise I do outside of school for PE. I can do online PE but they say it's very hard. I could drop out of my high school and just completely switch to an online school, but that's seven online classes I don't think I could handle that. Thanks for the advice, and for reading my long posts .

[Kellysavedbygrace]

Hi Puppy. I'm so sorry to hear you are going through this. I can only imagine how frustrated you must feel. And I just went to your profile and learned that your mom is fighting a battle too. What a challenge you are facing. I wish I could takeit away for you. Actually I wish I could take away this sit king horrible condition for all of us- now we're talking.

Here are a couple thoughts I try to consider/keep in mind for my peace of mind during this ridiculously horrible and crazy condition:

- this is a season, and seasons change. It won't be like this forever.

- focus not, "one day at a time" or "one hour at a time," but "one minute at a a time.". (stay in this moment)

- don't worry about tomorrow because today has enough worries of its own

On another topic, here is a link to something I read Sunday. (this new site was just mentioned today on this forum).

http://dysautonomiai...page.php?ID=106

Anyway, this talks about workplace accommodations according to the ADA- which is a federal act that is enforced in all states and should also apply in school. Take this with medical documentation to your counselor and tell them that it is your right to receive reasonable accommodations. If the counselor doesn't listen go up the chain of command. His/her supervisor, principal, the superintendent of schools if you have to.

As far as your progress in school- it reminds me of Pam's (Hippychic) post earlier this week. I think we all have lost dreams and I'm sorry. What I do know is you are one smart cookie. I've learned a lot from you this year in your posts and I'm thankful that you share your wisdom with us. You are a blessing to me and I will be praying for your wisdom in how to proceed with classes. 2 yrs, 4 yrs, 10yrs- Although it is the loss of a dream, it's just a piece of paper and it does not define who you are. And even though we've never met in person, I know you to be one of the sharpest most encouraging young ladies I've met.

Edited September 26, 2012 by corina

[Kellysavedbygrace]

That was supposed to be "stinking" not "sit king"--- LOL

[puppylove]

Hi Puppy. I'm so sorry to hear you are going through this. I can only imagine how frustrated you must feel. And I just went to your profile and learned that your mom is fighting a battle too. What a challenge you are facing. I wish I could takeit away for you. Actually I wish I could take away this sit king horrible condition for all of us- now we're talking.

Here are a couple thoughts I try to consider/keep in mind for my peace of mind during this ridiculously horrible and crazy condition:

- this is a season, and seasons change. It won't be like this forever.

- focus not, "one day at a time" or "one hour at a time," but "one minute at a a time.". (stay in this moment)

- don't worry about tomorrow because today has enough worries of its own

On another topic, here is a link to something I read Sunday. (this new site was just mentioned today on this forum).

http://dysautonomiai...page.php?ID=106

Anyway, this talks about workplace accommodations according to the ADA- which is a federal act that is enforced in all states and should also apply in school. Take this with medical documentation to your counselor and tell them that it is your right to receive reasonable accommodations. If the counselor doesn't listen go up the chain of command. His/her supervisor, principal, the superintendent of schools if you have to.

As far as your progress in school- it reminds me of Pam's (Hippychic) post earlier this week. I think we all have lost dreams and I'm sorry. What I do know is you are one smart cookie. I've learned a lot from you this year in your posts and I'm thankful that you share your wisdom with us. You are a blessing to me and I will be praying for your wisdom in how to proceed with classes. 2 yrs, 4 yrs, 10yrs- Although it is the loss of a dream, it's just a piece of paper and it does not define who you are. And even though we've never met in person, I know you to be one of the sharpest most encouraging young ladies I've met.

Wow, thank you so much. That means alot to me and really made me feel better. I need to update my profile because my mom has recovered and she is healthy now, but thanks for saying that.I will check out that website. I'm thinking if we can work with the school and my doctor I will just keep going in homebound slowly but surely and possibly go back patrially as soon as I feel well enough.

[Christy_D]

Do you have an IEP? My son's IEP allows him 'Extended Year Services', meaning his homebound teacher continues coming in the summer until he finishes his classes. Soemthing else you might want to check into.

[Shiner Kitty]

They shouldn't be allowed to force you to take PE; there are a lot of reasons students wouldn't be able to participate in that. I can't find anything about Virginia, but students in other states have been able to get temporary or permanent medical exemptions/waivers for PE with doctor's notes. Some students were also allowed to substitute a health class for PE.

[leydengs]

I'm sure all that stress isn't helping your symptoms, yikes! Can you get another doctor? I know doctors that specialize in POTS are few and far between but could that be an option. I've taken those meds and the side affects to those meds were much worse than just dealing with POTS.

[looneymom]

First of all, you have the right to an education. I am a former special education teacher and know this by law. In your school district, there should be a special education director or someone who is in charge of all the Individualized Education Plans (IEP). My son has one and the catagory he is listed under is Other Health Impairment. My son does not have a cognitive impairment, although he does have brain fog when he gets very tired and then he does have to rest. Due to uncontrolled shaking, fatigue, occasional vocal tics, my husband and I decided to try K12 virtual schools. This is free public education online. Virgina is the hub for this online schooling. They set everything up and my son is required to do 30 hours a week Monday-Sunday. You choose when you want to work on school material and what classes you want to take. My son is gifted but I did not choose to put him into any of those classes because I did not want to stress him out.

I know you want a social life and school plays a big part. If you want to go back to school, it can be done. However you need a doctor that can provide medical documentation. MAYO wrote a letter on our son's behalf. We also have a cardiologist and neurologist that wrote up medical conditions on Medical report forms supplied by his special education teacher. Our son was on a homebound situation last school year and the school sent out a teacher 3 times a week with his work to work with him for an hour. The rest of the workload was left up to me to teach it to him. However, my son did not get too much work from his math teacher so I am concerned about his math skills. Because of other symptoms that developed over the summer, my husband and I thought its was best to go to virtual school in Oklahoma. He just started and he loves it. Hang in there and find out who your special education director is , so you can get the education you deserve. Your mom or dad will need to sign off on the Individualized Educational Plan. This plan is based on your educational needs and makes the school accountable for your education. You as a student have the right to attend your IEP meetings. Education is important and POTS is just coming along for the ride.

[yogini]

I think the others are offering great advice. I hope you find a way to continue your school, beause it is your right. In the meanwhile, be sure to take care of yourself and try not to stress out as it sounds like that is just making tou worse. Can your parents handle these school issues for you?

I hope they figure out why you are retaining water. Are you taking florinef? That is a side effect.