This semester is almost over and I've dragged myself through the mud only to decide music is too physically demanding and it's time to try another major.

Today the music department had a holiday party, and it was so upsetting to me that I left after 1/2 hr. There was food and friends and fun--but no food I could eat, no one who knew me well enough to say hi, and certainly because of that...not much fun.

I feel like I've lost my life to Lyme, like I've become a shy recluse (far from who I really am!). I'm tired of taking all these pills and feeling no results, and of making decisions based on my illness.

I haven't adjusted to Rutgers U at all. I didn't want to go there in the first place, and have been trying to make the most of it--not working.

Yesterday I started a transfer application to NYU (my dream school)...just to see if I can get in.

If I do, I doubt I'll be able to leave home next year. Something tells me I won't be feeling as good as I hope by next september. Maybe it's just pessimism. I could always defer? But I might not get in because I have no extracurricular activities--just Lyme!

What a hairy situation.

How do you cope with living around your Lyme? I can't bear catering to the illness like this, though I know I have to be careful, pace myself, and rest.

I just feel so unsure of myself and my decisions. What should I do?

Can I ever relate to this. I was going to the university of Maryland, and feeling like hell. I am not going anymore because of the birth of my son, but I doubt I will be able to return any time soon. Every day it was almost impossible to drag myself out of bed, trudge to class, only to forget everything I had read and sit overwhelmed with anxiety and pain.

I am not doing better, but I will be because I am going to try everything I can until something helps. And I am going to go on because I have people who care, and I'm sure you do too.

I am here for you to vent to/talk to if you want to. You can email me if you'd prefer.

I'm sorry about the music, and the party. I know how you feel.

Especially since at school, work, and home I'm surrounded by people who can only try to understand.

I just feel so lost, I can't bear to keep making sacrifices, large and small, and seeing no result. I know this is a disease that requires patience, but in the mean time a lot of windows of opportunity are closing for me. I just want to jam my pill bottles in those windows to keep them open a little longer!

I struggle for sure, but when I'm feeling really bad, I can give in to it, or I can do something about it. If I'm achy, I get on the treadmill (just walk) and kind of get angry at the disease. If I'm too sore, I get in the hot tub and think about how the heat is at least distrubing some of those "little buggers." When I'm feeling discouraged about not being able to eat the foods I enjoy, I try to use the opportunity to educate people about why I can't eat those things.

I wish I was there so you had a Lymie friend you could vent to. Are there any support groups in your area? If not Lyme specific, there is probably atleast an arthritis support group near Rutgers. It might really help. If nothing else, to be around people in a similar condition once a month reminds you that you aren't alone.

If you don't find something, you may want to consider seeing a therapist if you haven't. It's good to have a real live person to talk to. I know because I'm the type of person who doesn't talk about my problems. It gets stressful and you end up boiling over.

As far as your NYU application, you do have an extracurricular activity. It is called Lyme. Tell them about it on the application. If you can, make it into your essay, or an additional essay. Don't just write that you are sick. Write about everything Lyme has taught you. Perhaps you learned a new indepedence, or that people aren't always what they look like, or what it really means to appreciate what you love (like music).

When I applied to law school, I wrote an extra statement about my Lyme (which was then diagnosed as fibromyalgia...the "you tested positive for Lyme" call came 2 hours after sending my application). It was actually therepeutic to write. I cried a lot, but I finally had the whole experience on paper.

It was horrible. I couldn't understand what was happening to me. I had a 3.8 GPA and then all of a sudden I was a big fat dumbie.

I have been told countless times that this will get better. I too have lost the passion that I used to have for my music. The strain of the Music curriculum will take away from that some too.

If this is what you love and what you really want to do in life I encourage you not to give it up. Hang in there. If you are haveing cognitive problems which was one thing that was waying me down discuss it with your Dr.. Maybe some others here can talk to you more about that too. I am new to Lyme so I don't advise yet I am still here for answers too. If it makes you feel better. My friends that that were ahead of me said it wasn't that bad once they got though that 1st 2 years. Maybe they were just trying to make me feel beter I don't know. I hope to go back one day but right now it looks like that will be a while for me.

But I know how you feel when you say "I feel I have lost my life to Lyme." I encourage you to hang in there. I have let myself become a shutin. I don't like to be around alot of people when I used to feel most comfortable on stage in front of a croud. I haven't done a singing engagement in 6 months. I hardly even practice anymore and I have just started listening to the radio again. Don't let Lyme take your life away.

You are much younger than I am and have your whole life ahead of you. Feel free to email me anytime. I would be happy to talk to you. I can't give you much advice on Lyme Disease only personal experience.

I sure hope things get better for you. I hope that you are able to stay well enouph to continue with your education.

Cindy

Aniek--
There's a Lyme group that meets mondays in New Brunswick, but I don't have the energy to drive back there at night on mondays after a full day for a meeting. I commute to school from 16miles away. I was considering going to the counselors offered through the university for free to students...do you think they would know how to handle a student with chronic illness?
I know the NYU application (and many others) have places for additional information...I had considered writing something about my health problems there. Now that you've suggested to do that, I'll definitely use it for that. Hopefully it will help my case!
My symptoms began to interfere with my daily life when I started highschool and only got worse as I went through school. I graduated with a 4.0, 23rd in my class (of 467). If I can just keep my college grades up too, maybe that will prove to them that I have the qualities they look for in applicants.
*crosses fingers*

Though I still have to figure out whether to apply to Tisch school of arts or the liberal arts college...hmm!

Softballmom--
Music is definitely an intense program! I know now I cannot major in it--my heart isn't in it the same way it is with the other majors even if my enjoyment of it is the same. It will have to be a serious hobby, or at least a less formal focus (I've recently been in contact with a high school friend who lives in NYC about performing together again locally). I just played my "final" (concert) for jazz last night (I play bass) and tonight is the concert for Symphony Band (flute). I'm trying as hard as I can not to give up the things I love because of my health, but I also know I have to pace myself.
It's so hard to balance! I will definitely be e-mailing you to vent about the music program and Lyme!

Thanks to all of you. It's good to know I'm not alone even though I when I can't see evidence of it in close proximity.

Do email me anytime you want to vent. Good luck to you and I do hope you get to feeling better better soon.

Rutgers was my 'dream school' for my graduate education. I applied to the doctoral program in clinical psychology. I didn't get in but was accepted elsewhere....things happen for a reason, right?

I was a college prof until lyme came into my life. When I got sick I had two options, to keep teaching and push myself because I had to prove something and ultimately do a piss poor job of it, or leave my position and work on getting well. So as my children tell their friends, I'm in 'forced' retirement. And it was definitely the right decision.

I think that with any chronic illness there needs to be 'submission'. I know that sounds like giving up, but it isn't. Giving up is sitting in a dark room somewhere, isolated, not taking care of yourself and waiting to die. Submission is accepting the fact that you have an illness, that this illness does effect the way in which we live, and making changes to deal with what has been thrown our way.

Submission is not easy. I think a grieving process accompanies it - we mourn for who we once were, what we can't do, but it is necessary.

The bottom line in all of this is that we cannot live like we used to - that is the reality. It stinks but in order to get well, we need to make changes to our lives. We reprioritize. I loved my work and it was important to me, but I learned that I am not my work. I am me, a sick me right now and I'm of no use to anyone if I try to make myself any sicker by thinking I can do all the things I did in a healthier state.

Yes, I have to live my life around lyme, and everyday involves stopping and thinking about what I can/cannot do that day. There are lots of adjustments, but that's just the way it is for now and will be until I get well. There are days when I can shop, there are days when I have to stay in bed. There are days when I can walk of my own accord, and others when my energy needs to be conserved by riding in a wheelchair.

I know it sounds different, but the sooner one submits to this illness, the quicker one can get on with getting well....it requires a huge amount of patience and letting go of things that we have been comfortable with....
cootiegirl

With the college issue, I just know I have to apply at the very least to make up for cheating myself the first time around (I didn't apply because it's expensive and I didn't know if I could physically make the move when the time came). But I feel like there's no better chance of me feeling worse than there is of me feeling better at any given time, since Lyme seems to enjoy doing its own thing.

I keep waying the pros and cons of all the sides of the issue, but I keep coming back to "...but I really wanted to go to NYU."

I'm starting to feel like it would be better if I apply, and if I got in, to go for a semester and then have to take a leave of absence or transfer back to RU than to never give it a shot. At least I would know that I tried my best rather than putting it off...right?

Ach. What a complicated issue. I want to discuss aspects of this with career services at RU but somehow I doubt they will have the resources to analyze my options while taking into consideration how chronic illness factors into the situation.

But that's what you folks are for

To all of you, I really appreciate your continued feedback and input!

The school counselors probably have experience with some chronic illness. Not necessarily Lyme though. Even if they are just a sounding board for you, it may help.

If you go, you may also want to bring informaton with you on Lyme. If they don't know anything, they can learn from you rather than from some Duck they go and ask.

You have a wonderful outlook on things. I hope you never lose that.

I hope you continue to get better. I do hope and pray thet Lyme does not interfere with your dreams too much. Take things one day at a time and I hope everything will fall into place for you.

You say, "But I just feel that I'm cheating myself if I don't try to live my life the way I would if I did not have Lyme." Honey, you may be cheating yourself if you do! Put your head up to the monitor so I can give you a little smack upside it......you can't live like you don't have lyme right now... you have lyme right now! I'm gonna start calling you Cleopatra, queen of Denial!!

You sound to me like you are a person that doesn't do something half way and that is a very honorable trait, so take that trait and apply it to dealing with your Lyme Disease. The scale needs to tip in favor of getting well so that you can be the dynamic student that you know you are.....

Are you seeing an llmd right now? Would going to NYU involve relocation? Would you still be able to see a good llmd? How would a full course load effect your health (duh!) Could you attend as a part-time student (ding-ding-ding!!!). I know that $$ play a huge part in FT and PT status in school, but I always used to recommend to my students, to go at a slower pace, and do well with maybe just one course while dealing with a health issue, than going full tilt and doing so-so to lousy. Because if I am reading your 'voice' correctly, you would really hate yourself for doing so-so, right????

What is so absolutely horrible about waiting a year? NYU will still be there, your hopes and dreams will still be there, really!!! And you will be in much better shape to tackle that education....

Cindy--
Trust me, my attitude is not always so great! lol, but thank you for your thoughts. We're all just trying!

cootiegirl--
Another good point. I'm definitely not satisfied with mediocre, but dealing with symptoms and no diagnosis with highschool, plus a botched surgery my junior year, I graduated highschool with a 4.0 so to me that indicates that I can do well despite all of this.

I feel like I have already pushed my NYU dream off a year. I'm attending Rutgers full time, though with 12 credits instead of 15. I have two days off per week next semester. I put off my work availability at my job to weekends only. I suppose this is dealing with Lyme half-and-half, but to me that's a lot of compromise! I guess I just have to take it one step at a time. Winter break will be a time for me to rest and think about this all some more.

But back to NYU. I would be applying for next fall, so that is a year off. I could try to be optimistic and convince myself I WILL be better by then, but that may just not be the case. Heck I might not get in anyway--transfer admissions are even more selective than freshmen admissions--but if I do, I could defer if I need to?

My LLMD is over an hour from where I live now (at home, with my mom), so moving to the city wouldn't be a big deal. Through student services I could get excused absences for medical purposes, and if need be, come home for my checkups. I am only an hour and a half from the city.

So much to consider though. If nothing else, your devil's advocate style of answering my questions is definitely making me think through the issue from all angles, thank you for that.

Keep on keepin' on!

I lost my job,and can't do the things I used to enjoy, but have accepted that I am lucky to be alive, and won't ask for more than that right now. Later I will go with how my body feels, and judge accordingly, but most likely will never work as before, but who knows what can happen.

tough decisions on your plate, but let me add a little data for you to analyze...

when i first got sick, i was in the process of applying to grad school. literally. was calling for application extensions from my hospital bed. just got off IV a week before school started and was on orals as i could barely walk across campus. also didn't know how my post-meningitis brain would hold up to my pre-meningitis scores that got me into school.

did get stronger over time, made it through my first year and a half with flying colors. and then i got deathly ill again. this required leaving school, hospitalized again, home & IV for 9 months, had to relearn how to walk and read (yup, and i was in princeton's phd program in psych...relearning how to read). because i had a fabulous dep't, they were very flexible upon my return but undergrad at a big school... not too sure about that.

anyway, i finished my program about a year and a half later (yeah, i was quick) and got a tenure track faculty position. hadn't learned yet that if i was low-key, my health kind of stayed even keeled. nope, i was a go-getter, don't let health get in my way kinda gal. achieve and love it. so i made it through a rigorous first year (this is where i got to see how it was for undergrads btw) and over the summer, i started feeling a bit lousy. by sept, starting my second year of teaching, research, advising, going to national conferences etc (sound familiar cootiegirl?), i got sick again. would i let that stop me? no.

i taught my courses on Mon & Weds, did my research and advising on Tues & Thurs, and Thurs afternoon, my IV nurse would show up, hook me up for infusions until Monday morning when I would unhook to give my first lecture at 11 am on Monday. Great until November when I collapsed in class. And that was that for a couple of years in which I had meningitis so bad that, once again, had to relearn to walk and read and ... I did also "retire" at that point.

Now here's the key data. That next recovery time I took it slowly. No power forward academic type. And this time I maintained my health for years (4-5) to the point where I was rock climbing in Dec. of last year. Cool hun? Except my gram got sick and I did the power-forward take care of her like I was never sick thing until she died, and well, I'm sick as a dog again, right back where I've been in the past. So, to summarize, do what I want and get super sick, take it slower than I want and make compromises, have a pretty healthy life.

This is not to say don't go to school or NYU. This is just a story that might help you see how MODERATION is crucial even when you are young and relatively healthy. I was 25 when this story started and just saw all this as a pain in the butt, wall in the way of my hopes & dreams.

Hopes & dreams will be there regardless of the TEMPO with which you pursue them. LD and its treatment deserves the same respect that your desires do. If it you don't take care of it and work it into your "big picture" as I didn't, it will tap you on the shoulder until you can't ignore it anymore at the cost of having to ignore all the other important stuff in your life. To loose EVERYTHING is really loosing your life, and I've done it a couple of times now. Having approached the life/illness combo platter both ways, I like the one that let's me really have a life over the longer term.

It does mean a lot to have the reality side of the dreams.

Somehow I feel in my heart and mind that if I were admitted to NYU, and gave it a shot, I would be able to find SOME way to make the necessary compromises to keep my health stable.

I'm going to be seeing my LLMD this thursday, I will definitely talk to her about this at my visit. She'll have a good idea of how realistic this is for my stage of illness.

When I weight my options, I do get discouraged realizing that my health needs to be taken care of carefully, but then I also realize that if I am admitted, I'm not leaving until next August. I do have some time to make strides of improvement.

Hopefully, I'll find a medication combination that works for me to that extent. Then it will be a matter of maintenance through plenty of rest and good eatin', which I feel I will be able to do wherever I end up--whether it's in the city or another year at Rutgers.

That way you could avoid 8am's possibly..Beg for a compassionate advisor..Contact the college President if necessary. Go overboard with thanks for them considering admission to a medically disabled student..

Then do your best to find a daily groove to keep you well..And if you can't keep up, then ask for more accomodations.

My dauther should graduate from high school in June and she is too sick to even know what happens next..She says she is going to Florida to school and yet hasn't even read a college brochure or been well enough to take boards..

She always wanted to be a vet and was on the distinguished honor roll..Then came lyme and bartonella. But now, her reasoning is way off kilter..She has attempted suicide 4 times.

She can't even take her lyme and psych meds without my support and most days doesn't even check her blood sugars and she is a juvenile diabetic..I would love for her to have a couple more years before she made these choices regarding college.

So please count your blessings that you have your head on tight and can do what others may never be able to do. Keep fighting for your dreams, but temper it with realities that may interfere.

I do not work anymore because of taking care of my daughter, but I was a teacher..I did not have a struggle with lyme disease and even though I have some of the screwy symptoms, do not think I have it, but I had to struggle to get to college.

I was from a broken home when it wasn't in vogue..My mother moved back home to find a job and for her parents to help with raising me..I was very athletic and loved sports..My only goal was to be a p.e. teacher. Mom had no money..She would have been on welfare but was too proud it accept anything.She waitressed, did home health care, etc and eventually found a job at a foods plant.

When I went to high school, my guidance counselor told me that in spite of the 98% IOWA's etc and great grades that I needed to go the secretarial route..(NO cuts intended on that route, just wasn't what I wanted)

I told my counselor that I was going to college..He said your mom can't afford it.He also had another teacher that was a friend of my mother's talk to me..

I finally won and choose the college bound math-science tract. I got a Senatorial Scholarship and all sorts of loans..College ended up being affordable. You can achieve your dreams..Never give up, just modify them.

I talked with my mom and decided my goal right now is not to transfer for sure, but to be accepted into NYU. If I am accepted, I can defer for up to a year, or I can decline and stay at Rutgers longer (or even take a leave of absence if it came to that).

So baby steps, right? Goal number 1: be accepted to NYU this coming fall, and take it from there.

I will also of course be taking your advice in refusing to give up my music. I am giving up the stress and physical demands of majoring in music, but I'm not giving up my personal goals and enjoyment of day-to-day playing and singing

I thank you all again!

I went to career services yesterday to try to see if objective opinions from tests and personality profiles could solidify whichever direction I was leaning in that day.

Unfortunately, I could not clearly communicate information about Lyme Disease because the counselor I was assigned to is almost completely deaf. I felt really bad not being able to communicate with him well, but I haven't been around a lot of people with hearing disabilities to that extent, and I had trouble understanding what he was saying. I tried very hard to concentrate and answer his questions, but I think I ended up giving some misinformation because I misunderstood his questions. Aggh, I know we don't need annymore misinformation out there.

He also didn't help with the transfer issue, but I guess career services through the university don't really want to encourage you to leave. He did, however, give me a list of links and passwords to career and major tests offered by Rutgers. I suppose it doesn't matter much about transfering because the more I reread and restate what I'm considering doing, the more it seems like I've already made up my mind, lol!

Based on those tests, I have a high proclivity for artistic expression in my personality profile. I have an equally strong proclivity for artistic and educational endeavors as leisuretime choices (which means I like to learn for fun, yay...I do.)

And a bunch of other things, but I showed my mom the printouts and she said it all seemed accurate. Long story slightly shorter, the top careers it was recommending were in the arts.

It said I am most suited to be a Musician (doh!) and second most suited to be an artist, which included photographer in its list.

Anthropology-related fields were extremely low on the list, coming after journalist and businesswoman type jobs. It seems that anthropology is more of one of those educational learning-for-fun interests of mine, but doesn't match my career goals.

I suppose I knew that already, if I really wanted to be direct about it. But sometimes it's hard to know if my opinion is clouded by illness.

I also took about 24 sheets of paper from a director of Rutgers' majors with descriptions, fields of work from that major, and jobs that recent graduates and alumni have held since graduating from that program.

I went through and highlighted the job names that appealed to me, and recycled the sheets for those majors with less than 3 things highlighted. I went through the remaining majors and highlighted the recently held jobs of alumni that appealed to me, and put it in order from most highlights to least.

The top sheet was Musician, with 10. The second sheet was visual arts, with 9. The rest were 5 and below.

Go figure!

Sorry, I didn't keep this short at all.

I think my rambling on and on is indicative that I am rather excited that my career profile results were just a reflection of what I already knew. Those things don't necessarily carry a lot of weight, but my mother pointed out sometimes you just need to hear it from another source to trust yourself.

So now that classes are over, I'm going to start taking my camera out on the slightly warmer days where I'm not feeling as bad so I can build a portfolio to apply to the photo and imaging program at Tisch of NYU. Hopefully my published work in Shutterbug magazine will be an extra little push in the admissions process.

I found your message very inspirational today. I think it's obvious you know where your heart is taking you.

Music and the other arts have so many directions. My father is a musician, and my stepmother teaches music. My mother, who has no musical talent, has always volunteered or worked with performing arts organizations. I don't doubt that you will find away to keep music an important part of your life.

My father teaches at a music conservatory and used to teach at a university. If you have any questions that you would like answered or advice let me know. I'd be happy to pass on some questions to him.