I am a high school senior who has had Lyme for quite a while now. I was recently put on homebound. I have yet to have any success with treatment so far
I was wondering if there is anyone who can speak from experience, on how to deal with the whole college thing while being too sick to function
I have always been a really good student, good athlete, involved in the community, and had my hopes set on top colleges. Now that I am too sick to tolerate as much as I had before,and with uncertainty of when this will all end, I wonder what is going to happen?
Education is such an important part of a persons life, and I do not want to have my dreams compromised as a result of Lyme. Because, I know when I am older and cured, I would regret not having the college experience I always wanted.
Nevertheless I am working on applications and will have to get out of touring the schools. I have been on oral abx. for about 3 months (tried a couple different things) and have had no luck.
Is it time to move on to another treatment? When will the meds. start working and this nightmare come to an end? Anybody have any relevant success stories? Or any good advice in general?
Sorry for such a long post... Thanks for any help
Posts: 4 | From USA | Registered: Nov 2008
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posted
dear slt1817, so sorry you have to suffer with this disease, but thank goodness you found this supportive web site, lots of good info here.
My son just started his 4 yrs at a SUNY college in NY. If you have any particular questions that I can ask him let me know. You can't give up your dreams because of Lyme!!!
Maybe you should look at community colleges in your area so that you can attend part-time to start and live at home for your first yr. Or, try dorm life for one semester to see if you can manage classes and the disease.
Changes to living arrangements and class schedules can always be made so don't be afraid of trying to live your dream you sound like a real fighter!!!
Whatever you decide, my best wishes are with you!!
Posts: 16 | From finger lakes region new york | Registered: Sep 2008
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posted
I have great empathy for you. My daughter, with Lyme since she was 10 years old, is also a senior applying to colleges.
Last year as we planned for college we changed the way we thought about it. Instead of going away and graduating in 4 years, maybe her path would be a little different. This was a hard reality for her and her parents to accept. It just wasn't part of the grand plan.
Once we accepted that reality we could plan that new path. For her that meant a local college, a light course load for the first year. We even wondered if that was possible as she lost her ability to sequence numbers and letters.
After six months of oral ABX she started to get better and now, a year later she is fevorishly applying to colleges, all out of state.
She needs help because the college process is overwhelming even if you don't have Lyme.
She needs her parents to help with the coordination of paperwork and she needs us to help keep her and not stressed. Is there someone who could help you?
Family therapy helped us alot. We needed to understand what it's like for her to deal with her Lyme and she needed to understand how to communicate with her parents, both of whom have Lyme.
Sounds like you are in the early treatment phase. You will get better. And you will go on to live the life you want.
Hang in there.
Posts: 79 | From Rhode Island | Registered: Jun 2008
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ajisuun
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posted
Stick with the antibiotics, this is a long-term sickness and cure. As for college, don't give up the dream, but find a way to make it work. Like others have said, it may mean that the fulfillment of the dream looks different from the way you always pictured it. You can do a lot with scheduling and taking a little load than is possible in high school. If you are too sick to go to a local college, you could try taking some courses on-line until you have the strength to attend classes.
Above all else, give yourself permission to do less than your peers. I don't mean lower your standards, but realize that right now you may not be able to "have it all" with a full slate of classes, all kinds of extra curricula activities, active social life etc. etc. Prioritize and make choices accordingly. I find that I have to have an "energy budget" where I decide each day how my precious energy will be spent. Just like budgeting your money, you need to budget energy for all the things in your life. On really bad days, personal hygiene may use up most of the available energy, but on good days, you may have some you can spend on entertainment. Balance, balance, balance.
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posted
I'm with ya! Hang in there. There are other people doing this too.
I can't tell you how you should do things; it's different for everyone. But I can share a little of what I have tried, and maybe some of it will work for you, too.
For me, learning flexibility has been one of my biggest accomplishments over the last few years.
I only found out in the last two months that I have (or "may have" depending on which test results you look at) Lyme. But I have been pretty ill for at least 8 years. I ended up homeschooling high school, which was fabulous for me, but I understand and can relate if you're missing the atmosphere of school and constant socialization.
I got my Associate's in fine art at a local community college that has a super-talented staff of artists with varied real-world experiences. It wasn't what I had planned, but it worked into my family's budget, and it worked out with my health. It was a good step. Now, on good days I either do photo shoots or design logos and the like with my own photography and graphic design business.
I'm now at another school in the area (yes, still living at home) working on my Communication Bachelor's degree. I only have a semester and a half left...I've been a 4.0 student everywhere I've been, but as my symptoms are getting worse these last couple months, I can feel my grades beginning to slip just a tiny bit. Which is kind of scary, since I'm here on a scholarship. But there are people to talk to who can help, so that's what I've been up to.
I'm an ambitious person who can find a lot of things to laugh about. However, I also am really shy. So here is how I've been getting out of my box and learning to try new things, trying to fulfill my goals, enjoying life, but still being responsible about my health:
I have a list (like a life list or bucket list if you've heard of that, except I'm not planning on dying any time soon) of things I've always wanted to do, things I'm terrified to do and things I'm embarrassed to do. When I have a good day, I make plans to cross something off the list.
Sometimes it works--and I get to interview a forensic artist I never would have had courage to talk to. Sometimes it's a flop--and I have to cancel my airline tickets to visit a college friend in California (I'm in IL), which was disappointing because I'd never been in an airplane or traveled by myself.
Just before this semester had started, I was feeling incredibly restless. I was making plans to either enroll in a little tiny Bible college in South Dakota or move out into an apartment around here. Sounds good right? But then my health took a nose-dive, and now I barely have energy to feel restless. I could be really depressed, but I'd rather be thankful for what I can still do. Being able to roll with the punches and to try plan B or C is part of what keeps me from completely freaking out.
My point is that even if things don't always turn out like you hope, you need to keep trying. Don't let the failures crush you. Move on to a new project or explore a new area of life. Sick people can have adventures, too.
I know this post is INCREDIBLY long. Sorry. Send me a message if you want to chat some more. I'm totally open to sharing what I'm learning or listening if you need to vent. And I'm usually pretty upbeat, so I can try to cheer you up if it's a bad day.
Hang in there.
Posts: 9 | From IL | Registered: Oct 2008
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
My son is also planning on starting at a local college. You might also want to consider distance learning. Taking classes online, asynchronously, will allow you to take class whenever you are at your best, late at night or early in the morning if need be. Ask about the distance program at the colleges you are considering.
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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bettyg
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posted
welcome slt,
please UPDATE MY PROFILE and go to bottom where it says ENABLE PRIVATE MESSAGES and show YES!
then folks your age can send a private message to you that way, and it's PRIVATE vs. public.
pms are the way we send lyme literate md, llmd, info!
your private home email and the senders is KEPT PRIVATE!!
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Dr. Burrascano's most recent "Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @ http://www.ilads.org/burrascano_0905.html suggests that you discuss with your doctor continuing treatment until you are symptom free for 2 months.
please see BettyG's newbie package info on the link below; click on link at bottom of my package. Check it out as time permits for you! @ http://tinyurl.com/58eyou
Fyi: we have over 1000 viewers daily; 200 - 400 posting/replying; so specific titles get our time/replies. non-specific ones, i sob, scroll on by!
Also, please be very specific in the subject line what you will be discussing so more people will be able to assist you.
posted
You've gotten some great suggestions from others here.
I would add that you might want to check out the disability office at your university and make them aware of your medical condition and how it affects you personally. They can help you to gain the backing of your professors, which is especially important with transient symptoms that can flare with stress and impact cognitive function. Usually they will require some type of documentation, but frequently that can be a letter from a health care professional. Find out what they require ahead of time. Your LLMD's office should be able to provide a letter once you know what you will need.
Being registered with your university's disability office can also help to validate your condition with your professors. Your disability office may also be able to offer you suggestions or software and learning resources that will help you to cope better. Also, in the event of a worst case scenario where you find yourself in the position of needing to take an incomplete in a course or withdraw medically, someone will already understand and be in the position to help you to exercise those options. It can be good to know your rights and to have an advocate who is already on your side should there be anyone unwilling to assist you in a time of need once you have passed the official drop date.
Once you are registered and know what courses you will be taking, be sure to get acquainted with your professors early on. It is better if your professors get to know you so that you will have established a trusting relationship with them should you experience trouble later on. That way they will already know you are responsible and not someone who is prone to take advantage of a situation. If they see you at your best, it may help them to recognize when you are having difficulties that would otherwise be invisible to an outside observer.
Posts: 487 | From USA | Registered: Feb 2002
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Go to college. Remember that what is most important is that you give yourself a chance to get well - and one more thing - most important is not what college you attended or how long it took you - but what college you graduate from. My daughter is graduating in December after having completed a four semester program in only three semesters and on the Dean's List too!! However - it took her seven years to get to her BA degree. Why you ask? Illness. Constant illness. More than once she got nearly through a semester and illness struck, spinal meningitis, mono, a Thyroid lobectomy, tonsils removed in the height of rupture and infection....you get the idea....and she could not complete the semester. My best advice to you, because you are with a chronic illness that can act out in various ways - take it easy. Don't sign up for a full load. Don't go away to college because you will need the support (and help) of family and friends. Don't invest a lot of money in your classes, consider a junior college to get required classes done (make sure the credit can be transferred to the college of your choice later). If you are in a lot of physical pain - ask your doctor for a "handicap" permit and don't be ashamed. College parking can be a brutal hike for an ill person burdened with books. Good Luck!! YOU CAN DO IT!!! -p
Posts: 641 | From So. CA | Registered: May 2008
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THATCOLORGREEN- I figure I have had Lyme for the past 4 years (when first symptoms started). i was always able to adapt myself by sacrificing my level of comfort to do whatever I wanted. I was able to carry on with sports, school,etc as usual, even though I was increasingly getting worse. I think pushing myself too hard was eventually what led to a "turn over" in my state. I went from feeling horrible and being able to do things to feeling even more horrible and NOT being able to do anything. I guess the thing that bugs me the most about all this is that I have been to upwards of 25 doctors , and if just one had been educated on Lyme this could have all been avoided
Thanks for everyone who mentioned "distance learning".
I looked at some of the colleges I was considering and a lot of them had that option.
Posts: 4 | From USA | Registered: Nov 2008
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Shosty
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posted
Our daughter is a freshman at an Ivy League college. They have an office for accessible education and provide support and letters to give to the prof.'s, based on documentation we provided. Course load can be lighter, too.
If you are in the early stages of treatment, you can take classes in person or online, closer to home, and later apply them for credit as a transfer student. Or, when you apply as a freshman, ask the college about credit.
Definitely don't go to college too far from family and the doctor/s you have come to trust.
You sound like our daughter. Learning to pace yourself is important. Forgive yourself for not being able to do all that you want to do!
One other thing: college is much easier to handle than high school, because you can go to one class a day, and work in bed. Cognitive issues and fatigue and pain are still obstacles, but with a reduced courseload and accommodations like the ability to postpone work, can help.
You have years for this...I am 57 and went back to school last year! But the dream of a "normal" on-campus experience is still possible, too.
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hshbmom
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Member # 9478
posted
Hi,
I'm glad you're able to go to college.
If you have an IEP it will follow you to college.
Many students with Lyme disease qualify for Special Education with a classification as Other Health Impaired.
Colleges can offer you accommodations and modifications just as your current school does if you have an IEP.
A Section 504 Plan does not follow you to college.
For more information see Wrightslaw.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hi,
I'm glad you're able to go to college.
If you have an IEP it will follow you to college.
Many students with Lyme disease qualify for Special Education with a classification as Other Health Impaired.
Colleges can offer you accommodations and modifications just as your current school does if you have an IEP.
A Section 504 Plan does not follow you to college.
For more information see Wrightslaw.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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Shosty
Unregistered
posted
That's not strictly true. Colleges are still under the Americans with Disabilities Act and Section 504, but they do not have to offer a "free and appropriate" education.
Our daughter's college accommodations are strictly medical, and she has never had an IEP at public school or college.
I have been working with a woman on a project for music therapy for terminally ill children. This woman was sick all during her teens, and was homebound and tutored. She ended up excelling in college and now runs the music therapy program at a major school.
Another woman we know was basically bedridden during her teens, and graduated a few years ago from a wonderful college, and is now a dancer.
There are so many stories. The suffering now will end up making you a deeper, more empathetic person. That is trite and hard to hear, but you will be very mature and focused, and do very well, when things ease up a bit for you!
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