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Another Year At Home


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So, since I'm still dealing with getting PANDAS under control, I'm not going to being to school again this year. My goal right now is to stay healthy for four months straight (the length of a semester) so I can feel pretty confident when I do go that I probably won't get sick mid-semester and lose all my tuition money.

 

The problem is, I'm going to be 20 in November and this would have been my sophomore year in college. I've been home since my junior year in high school. I only got diagnosed this past December, so I feel like this year will be a little different since at least I know what is wrong. I'm going to try to do some classes from an external degree program (if I'm accepted) so that should take up about 20-30 hours a week.

 

But I gotta be honest: I'm so bored. I've been bored for three years now, and even with the possibility of doing some coursework (on my own, so it won't even be like an exciting class discussion) I know this year is going to be boring AGAIN. And weirdly, that's my biggest problem right now, facing another boring year. Which, I have to say thank God/the universe/whatever because this time last year my biggest problem was losing my mind. But that doesn't exactly fix this situation.

 

I'm afraid to get a job simply because I don't think I can be reliable yet. I feel like I would miss a lot of work and while I'd be ok with being fired for that, I don't want to be hassle to someone who will hire me and two weeks later have to hire someone else. Same with volunteering; I'd love to go back to a barn where I volunteered freshman/sophomore year with disabled riders, but they really need people who can commit.

 

For the same reason, I'm afraid to commit to any lessons (like ballet, I'd really love to do ballet) because they're so expensive and I don't want to lose money.

 

I'm looking for a chronic illness support group, so hopefully I'll have that at least. It's really lonely with all my friends so far away at college. None are within an hour and I'm still learning how to drive without anxiety (it's a process :D).

 

So I guess what I'm asking for is some support in being optimistic about this year and maybe a few ideas on how to keep myself busy.

 

Here's what I'm really trying to convince myself of, and let me know if you agree: As soon as I start feeling better I'll go back to school and then I'll be out into a job and then maybe have a family and it'll probably be another thirty or forty years before I really just have a lot of time to sit back, read good books, take good naps again. I'm really trying to look at this time as if maybe it's a gift of some sort, but, dang, it's hard when I so badly want to be at college.

 

Thanks in advance for you input.

 

And also, just a shameless plug for myself, if any of you in CT want to give me a job understanding the whole PANDAS complication I would love you forever! I'm a great typist ;)

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I think that what you're trying to convince yourself of is correct! I had two years "out of business" when I was a little younger than you, and since I've been "in business" again (now 25 years or so straight), I don't get much time for naps, reading, writing, pursuing interests, etc., and I wish I had that time.

 

When I was "out of business", I did spend a lot of time reading, but I also spent a lot of time journaling - just writing for the heck of it, writing my experiences, my thoughts, feelings, plans, worries, etc. It was good for my writing skills, but was also good for my mind and soul. I had been through a lot (as I'm sure you have), and it was very therapeutic to get it all out. I still have tubs and tubs of old journals. I haven't had the guts to go back and read them yet but some day I will. Anyway, that's one recommendation.

 

Another recommendation if you're really bored: get Netflix and one of those instant download machines. I have one now, and MAN, do I wish I had time to watch e.g. the WHOLE LOST show (season 1 on), all of the HBO series from start to finish, etc. Granted I haven't had time to watch much TV for the last 25 years, but I sure wish I did now that it's all at my fingertips...

 

And another recommendation: If school is nearby (or any school is nearby), why not audit the classes that you'll be taking next year? That way you could learn and keep busy/interested while not worrying about grades or consistent attendance, and if your first year back is stressful, at least you'll have a jump on the class because you will have seen/read the material before, maybe thought about ideas for papers or read some of the books... so it will take off some of the pressure. I'm thinking that you could audit at no cost.

 

And another: exercise is so important to our health, and once you're 100% "in business" again, it may be hard to find time for it. Perhaps an athletic goal to pursue? Run a long-distance race or something? Get yourself into some kind of exotic yoga pose? That kind of thing is great for body and soul, and a sense of accomplishment as well. Trips to a gym would also get you out and socializing. And again, it would help you start next year ahead of the game by being in great physical shape.

 

You could always, also, volunteer for an organization that doesn't require such reliability. I don't know your interests, but many organizations need help with one-time project or event work or just "being there", anything from socializing abandoned animals at a pet shelter to cleaning out the file cabinet in a church office to revitalizing an old building with new paint. Getting involved like that can help with the loneliness aspect, as well, and may lead to some paying gigs - and in any case is good for one's resume. Many communities have volunteer coordinating organizations that sort out volunteer opportunities into one-time gigs vs. ongoing stuff. Or try a site like volunteermatch.org - or I'm sure you could google and find others.

 

Good luck and try to enjoy the time!

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I think the idea of journaling is great - you could also pursue getting articles published. For interaction, you could also participate in a local support group. I used to belong to my town's support group for parents of kids with special needs and the most powerful meeting was when a graduating high school senior came to talk about his experiences. As you can see from this forum, parents need help understanding what's going on with our kids. You could also make presentations to schools to let kids know they're not alone. Approach local therapists - perhaps they have group sessions of teen patients who could really benefit from a peer presentation. These would be one time commitments but would take time to prepare and would get you out in the community.

 

As for the job, I'm in CT and looking for a new job too, in some sort of advocacy position or working with struggling kids. So while I don't have a job for you, I'll happily share any leads or ideas...

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As the stay at home Mom of 3 kids all on summer vacation, I can relate to getting cabin fever and feeling like the walls are closing in on you. Try to get out every day, get natural sunlight, and be around other people. I like the idea on online schooling. Do you carry an offical diagnosis of OCD or anything else besides PANDAS that protects you under Disabilities Act? When looking for a job, if you feel you really want to try this, look for a basic part time retail job in a stock room. This will help you ease back into the job force with easier hours and not so much public interaction. You can control your surroundings more. Don't worry about possibily having to quit. Retail is used to dramatic roll over so it really wouldn't be a big deal for them. But don't warn them about the possibility of it either.

Edited by Vickie
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Hi there!

 

I think you have a great attitude about the whole thing. I know it stinks right now but in the whole scheme of things, it's not going to be that big a deal when you look back 20 years from now.

About schooling, some universities offer classes with online discussion, which of course is not as good as being there, but at least it provides some interaction.

As far as a job, you could maybe try to get into something like medical transcription or something along those lines that you can do from home.

 

I am sure you thought long and hard about this decision and I think it's prudent to give yourself a break and allow for healing. I'm already homeschooling my kids but they still have a lot of activities and I've been contemplating just grounding everyone for a while, but in our case it was my husband and I who had strep somewhere! In any case, my ds ramps up for a few days and then seems to settle back on his own when exposed to strep (well, sometimes we've done steroids to help things along). So it's a tough decision and you have to weigh the pros and cons.

Are you on prophylactic antibiotics?

 

Isabel

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Mom2--This is off track but definitely watch LOST from the beginning! It's just...awesome. But yeah, I have netflix, I defintely do watch tv shows like straight through like that. Since this all started I have watched all of Dr. Quinn, The Nanny, Roseanne, LOST, The OC, Beverly Hills 90210 (original, the new one is weird),Grey's Anatomy, House, Sex and the City, Big Love, Defying Gravity, Legend of the Seeker, Skins, Ballykissangel, Greek, Kyle XY, Gilmore Girls, a lot of ROME, Sons of Anarchy...I know there's others, just can't think of them.

 

I'm trying to make a list for fall. So far I've just got Deadwood. Any suggestions, anyone? Bones and Dexter look interesting, but I'm not so sure.

 

Unfortunately, at all the schools around here you do have to pay to audit and it's not much reduced from regular tuition :(

 

LLM--definitely keep me up to date on if you find anything. I think I could have some things to say to parents about my experiences being a sick teenager (especially dealing with schools).

 

Vickie--Yeah, once things get a little bit better I think I will try to find a job like that. I just feel really guilty being a hassle to people (which is probably my PANDAS OCD talking, but still). I'd want to be a little more confident that I might have a chance at staying for awhile.

 

mati's mom--You're right about the online discussions being good alternative; the program I'm looking at has an online study group in the spring before final exams so that would be something to look forward to.

 

Thanks for your support everyone!!!

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emmalilly: three thoughts. first, maybe you could use this time to write a book. Self paced, but goal oriented, and you might feel like you are being productive and helping others. second, maybe you could do something else to learn at your own pace - maybe take up a language. Minimal money output, but feeling like you are learning something. Lastly, you once told me in a PM that your biggest fear was that the PANDAS symptoms would return, and that anxiety kept you from sometimes doing something you wanted. So I encourage you to examine what you are most afraid of, and then the worst thing that could happen if you tried, and how bad would that really be if it came true. Maybe school is too big to tackle right now, but maybe volunteering is not. Never be hard on yourself for trying something, even if it doesn't work out. The bravery you output just to try is worth it's weight in gold, even if the goal is not fully met.

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Do a search for free online university courses. Mit, Stanford, etc have old lectures available online for free. You can look over the different courses (like auditing for free) and this will help you to decide what you want to take later.

 

Do you know how to cook? It's a great skill to have especially if you want to have a family - experiment now and not on your future husband. It's one of these things that is always evolving. There are a lot foodies out in the real world.

 

Collect some recipes so you won't starve at college - food always helps you to make friends. Crockpots are easy to use - rachael ray has recipes online. They are good for people on the go.

 

Collect family holiday recipes and make a book. Great present for mom. You'll be too busy later to do it.

 

My dad is addicted to youtube. Pick a hobby, activity, or project and there will probably be a video about it. Some are informative and some are unbelievable - lol.

 

A lot of libraries offer free courses.

 

I am trying to think of things for free - now for money the sky is the limit.

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Emmalilly,

 

We need to talk. We're staring down the barrel at at least another semester at home. This should be his junior year. Sweetie, I'm so sorry you're sitting this semester out but you've got such an exceptional head on your shoulders that I know you will find things to do with your time that are way more than time fillers. A blog from the PANDAS patient perspective in your age group would make an outstanding read and you have the writing abilities to do it. I can assure you, I'd make sure Gat read it.

 

I have clients in my practice that struggle with going on disability for their conditions. I have explained it to several as looking at their recovery as their job...and all of the things the incorporate into their lives like my services, medicine, rest, yoga, journaling, spiritual growth pursuits, etc are all considered "therapies". The job becomes incorporating "therapies". I have 2 clients who've adopted this approach in the last four months (one male, one female) and both report great success with reframing how they view this "time on the bench". Just thought I'd pass it along.

 

Hang in there,

g

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