Right now I'm diagnosed with CFS, but it just doesn't seem right. Plus I'm not under any treatment. Every day that I wait for my next appointment, next set of tests, seems like a waste of my life. I haven't even reached my 19th birthday yet and I know the complaints that my peers associate with their grandparents.

I went to my Dean of academic services for disability/special needs. She was very kind and understanding. But this week was the first week where I really had to come to terms with my physical limitations. Highschool was so much easier to get through by pretending. I can't pretend in college. I have to walk across campus repeatedly each day, I have to drive 35 minutes there and back each day to avoid living in a dorm (which I feel would be worse for me).

I have classwork, homework, practice. I'm a music student so I have so many classes with a lot of work and very few credits. Its something I love but its so hard.

I'm not willing to give up my one passion in life because of whatever disease I have. But I feel like I'm running on less than nothing, and I don't know how much longer I can keep it up. Its only the second week of classes.

I've been ill for all of highschool through the present and I'm sure into the future.

I feel like I'm constantly in limbo.

I know I'm rambling but its so hard to collect my thoughts.

I know New Jersey is supposed to have a pretty high incidence of Lyme so maybe there are a few Jerseyans here. I go to Rutgers. Shot in the dark here I guess but...any advice in general or pertaining to my geographic standing would be great.

How does a type A personality cope with limitations? I certainly don't know yet.
I just have so many symptoms, I don't even know what to complain of when my boyfriend asks me what hurts today, if he can do anything. He is the only person I know on campus and I'm having a hard time making friends because I commute...the social damper doesn't help my mood any when I'm already feeling downtrodden due to my health.

Thanks for listening.

------------------
cheers,
AG

Welcome to LymeNet!

Sorry to hear you are feeling lower than a craw-dad's limbo stick.

Had to read that one more than once.. didn't ya?

HA!

I am hoping our dear, sweet, "arg82" (a member here) ... isn't putting out the word that I am the "let's all ditch school queen"... or something like that!!

If you get time.. check out her post.. here in the General Section.. and see what Annie decided to do when faced with the same type of situation. Here is the site...

http://flash.lymenet.org/ubb/Forum3/HTML/010838.html

You said...

"I can't pretend in college."

You got that right!!! It's a big change, isn't it?

Kinda like suddenly being a little bitty fish in a great big pond!

Where do I go boss? Where do I go?

The drive and the walking about did me in too. Some days I was lucky if I got a shower and got dressed.. much less walked across town to classes in the few alloted minutes... only to be so exhausted when I got there that I couldn't pay attention!

Ok.. think of this...

Have you ever seen anyone try to walk into the forest and come out with a hand made paper plate?

NO?

Why not?

Because it would be rather stupid to waste the time and energy and effort on doing something that could be "worked around".

If you need a paper plate..

Go buy one, borrow one, wash off an old one, order one, use a china plate, use a napkin, or...

Go without.

The world WON'T end because you didn't go cut down a tree.. build a paper factory.. and make your own paper plate.

You have made it through high school.. which is very difficult... and I for one am proud of you for doing it.

But now... your life is changing.

Suddenly you have become like this little tiny chick.. just hatched from an egg.. and you break out of the shell... shake about a bit... look around and realize...

The ENTIRE world is sitting there in front of you waiting for you to do...

ANY THING you want!!!

There is NO shame in admiting your limitations.

I admit now.. due to the bad brain... I can't write a check, put it in an envelope and mail it without it being a HUGE ordeal for me. And I had worked in a bank!

I stressed, and stressed so bad about it.. that I made myself sick EVERY month.

Finally... way too late... I came to the conclusion that my days spent in bed, wracking what brain I had, to try to do it, was NOT worth it.

I contacted some folks.. and hired a book keeper to do it for me.

That was about 6 years ago. Now.. instead of stressing every month and worrying my self.. and feeling "stupid" because I couldn't do it...

I spend that time doing other things.. like being here.

MUCH better use of my time and energy.. and I am much more happy!

These are just silly examples... off the top of my head.. but I hope you see the big point I am trying to make.

I believe on the Florida road signs, years ago, they warned motorists to...

"Arive Alive".

That is also how you want to look at life and new adventures.

Or, at least that is how I look at it!

Now.. how can we help you with your Lyme situation?

I wanted to be in a higher level jazz ensemble my junior year so I learned a new instrument (bass) a month before auditions, got in, and ended up getting to go around doing gigs with an improv quartet comprised of my best friends. I became in-demand and this past summer even did a gig as a paid musician in the orchestra for a community production of Les Miserables.
I did the same thing with..get this..a wind instrument in college. I took lessons in august on flute after quitting for four years. I auditioned the 3rd day of classes and made it into the symphonic band with my classmates who are performance majors. I'm int he same band as my boyfriend who has studied classical clarinet for 8 years and has won competitions and gone to conservatories. Granted, rehearsal was so difficult I had so much catchup to do, but I know it will be a repeat of my experience in high school.

Kind of a long story to make a point, but this is how I look at college in general...especially when realizing my limits. I just don't think I'm willing to wait...not for college, but also not for results.

I want so badly to move my dr appointmentup, but my rheum has such bad office hours because he has 3 offices.

Though it seems a rheum wouldn't be good for Lyme? I don't know. He listens to me though, and I've been to dozens of doctors who were nothing but pretentious, conceited, and rude to me.

To get to the point, I really don't know if I have Lyme, but it just seems like it could be so likely...CFS seems like such a "blanket diagnosis" as my mom called it. Even she, who at first never believed me, felt it was a generalization of symptoms.

I got some great information so far on this site but its just so overwhelming. Where do I begin to investigate this past listing symptoms?

You and Annie need to chat. You're facing the same problems, except for one thing.
Annie is being treated for Lyme disease, but you're unsure of your diagnosis. That adds a lot to your stress level!!

Don't know your symptoms, but I'm assuming you must suspect Lyme disease since you're here.
A lot of people have been mis-diagnosed with CFS when they had Lyme.

I recommend that you go to Seeking a Dr here on LymeNet & ask for names of Lyme Literate Med Drs (LLMDs) near you. Put your location in the title.

Names of drs are not given here without their permission, but contact info will be e-mailed to you.

On the left, click Support Groups & contact those near you.

On the left, click Lyme Disease Association.
Lots of valuable info there, and they're in your area.

You may find that you need to drop the classes, but try to keep up the music - either with your former teacher (near your home?) or the college instructor.

What are you studying?
...piano, organ, voice?

If you're up to it, you could maybe audit a class or two.

Be sure to read all the responses to Annie.
It should help you decide what you need to do.

You may find it helpful to read
"Symptoms of LD" at http://www.ocean-beach.com/_tick/tick_lymesymp.htm
(No spaces; 'underline' before & after ticks)

For reliable info on all aspects of Tick-Borne Diseases (TBDs) - Tincup's "Links for new LymeNet members" at http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

It's possible you have more than just Lyme.
Be sure to read about co-infections, like Babesiosis, Ehrlichiosis, & Bartonella.
Symptoms are so similar to Lyme, but treatment is different for each.

You said..

"I have to say, I'm at the point where I'm unwilling to do anything less than succeed despite being ill. Thats how I've always done things. I'm a musician, and I've done it by throwing myself into impossible situations and succeeding."

OK.. Sorry... my mistake.

Prior to that you detailed how rough your life is, sounded totally miserable and unable to cope... and said..

"I feel like I'm running on less than nothing, and I don't know how much longer I can keep it up. Its only the second week of classes."

I actually thought you wanted advise or suggestions about what to do.

But since your mind is made up to suffer through no matter what...

Let us know how we can help you with Lyme..

IF you have it.

Good luck.

Tincup: I'm sorry I came off like that. Both things I said I meant, even though they contradict each other...thats just the place I'm in right now. I'm confused, frustrated, stressed, exhausted..I don't know what to do. I just want to live as I know to live, and it doesn't seem like I can (without physical consequence anyway).
I'm even afraid to take the next step to try to see an LLMD. I have to get through my parents first...separately. My mother likes my rheumatologist and I don't think she would understand why I'd need a new doctor. I like him too, but if he won't test me, whats the use?
My father deals with finances and I'm on his insurance, so if the LLMD doesn't take it he's the one who has to pay. It's not that he doesn't care, he just isn't around so he is uninformed on my situation. He just knows I'm sick.
Then, assuming I got through them and found the LLMD...the testing, the wait for a diagnosis (or a confirmation of no diagnosis)...I'm so tired of tests and no answers, and wrong answers and..uhg! I don't know. Treatment sound daunting too.

And on the offchance I found one and he was bad...I can't deal with another doctor who tells me I'm "out of shape, look perfectly healthy, nothing is wrong."

It's all very overwhelming I think.

I apologize in advance for anymore erratic, incongruous posts I might make out of stress. I should collect my thoughts a bit more before I post. I'm just feeling desperate.

Thanks for being cordial and accepting despite my unpleasant attitude! I can't express how rare a finding that is...

I'm the one Tincup referred to. (And, no, I haven't been spreading the word that you're the "let's all ditch school queen" )

I had to make a very difficult decision about school just a few days ago. Here's a little history (bear with me here). I was going to be starting my (hopefully) last year of school. I already had to take a semester off in my second year and take light courseloads most semesters so I was already behind a year (started in 2000). I usually have the same "just push through it" attitude that you have but this semester my body wouldn't let me. I was also going to be commuting just over an hour each way for classes. I was all signed up for classes (three, after I had to decide to drop one) and ready to start but I spent most of the summer in bed, totally wiped out from the Lyme itself and also from starting IV treatment in July. I went up for my first day of classes and managed to push through it but I was totally wiped out when I got home. Then on the second day of classes, I drove around for a half hour looking for a parking space (my school doesn't have commuter parking and it's in Boston) and ended up having to walk quite a way to school from where my car was parked (or at least a long way for me after not having the energy to get out of bed most days recently). Halfway on the walk to school I felt like just breaking down on a bench and crying because I knew that I physically (and emotionally) couldn't handle school.

But, I sucked it up and made it to class that afternoon. I made it through the class, and made it home. But the idea was there in my mind that school really wasn't where I should be right now. My body was screaming at me that I couldn't do it right now but my mind was screaming at me that I only had one year left and I should just suck it up and try to manage through it just to be done. My body won. But my mind realized that it was the right decision.

School is there whenever you are well enough to go. Trying to push yourself to go when you're too sick to get a lot out of it seems like a waste. I tried it for four years, did manage to finish my classes and get decent grades, but I think it kept me much sicker than I would be if I'd taken the time to rest and heal in the beginning.

So, I made the decision on Friday that I just need to take time off. It won't be forever, I'll go back to some school eventually and finish when I'm better, but right now I need to take care of myself. AND I need to let myself have some fun. I need to let myself be creative. I did get a lot out of the last four years of school, I met a lot of great people, took some great classes with amazing teachers, and I've grown. But, I can't push myself anymore. If I had tried to push through the semester I would have dug myself a deeper and deeper hole where I'm afraid I might not have been able to come back from.

Once I made the decision to take time off, I felt like a huge weight had been lifted from my shoulders. I didn't really realize how stressed I was about school even before it began! In the past few days I have become calmer and so at peace with my decision and with my life. It's pretty amazing how quickly things can change.

Now, I understand your situation is different from mine but I think the underlying problems are the same. And I can tell you from experience that pushing yourself might get you credits, but you won't get as much out of it as you could if you wait 'til you're feeling better.

And, as the wonderful and wise Tincup told me while I was grappling with this decision,
"Never think of it as 'quitting'. 'Quitting' involves giving up for no special reason.. or because you just don't WANT to do something...
And ask yourself...
What is your goal right now? Is it...
Having a piece of paper that says you passed some classes so you can look at it while laying in bed and being too sick to function?
Or could it be...
You'd like being a well person with another direction in life for now?
Keeping in mind.. a college education is nice, sure.. but not when it makes you sick!
Kinda like eating a bath tub full of ice cream is nice.. but not if your belly explodes!"

If you'd like to talk, I'm always happy to listen and offer what advice and experience I have. If you have AIM my screenname is arg7482 and my main e-mail address is [email protected].

I hope you find peace with whatever decision you make. (Sorry this is so long ).

Peace and healing,
Annie

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``The best way out is always through.'' -Robert Frost

I tried to yesterday but she wasn't receptive. She's under a lot of stress from work so sometimes she'll listen to me and sometimes she won't. Sometimes she'll ask me things when I'm not receptive. So it can take a few days for us to get points across to each other but nonetheless, today we were both in the right state of mind.

My mom said she's willing to spend money and go to new doctors to get to the bottom of this. I told her I think I really need a LLMD to rule this out or confirm it, and I feel I need to do it ASAP because every day passed is another day sicker I am. We both agreed it would be worth it in the end even if what I got was a confirmation that I don't have Lyme and indeed my CFS diagnosis was correct. But I don't want to take the chance assuming its CFS and be wrong.

I just can't go another day feeling continually worse with no treatment options and things "up in the air".

So between the two of us we're looking up doctors...I'm doing it here, obviously lol.

She wants me to try to find an LLMD at RWJUH since I go to school right in the same town so it would be easier for me to get an appointment (time/availability wise). Plus, I had surgery when I was almost 2 y/o at that hospital so she trusts the facilities.

I'm still apprehensive of how to go about finding/choosing a doctor, what to bring, what to say/ask about. Any advice?

Thanks so much for the feedback, information, suggestions, advice, support!

It's great not to feel crazy.

No need to feel bad about what you think and feel. You are right.. it IS confusing and miserable.

Our goal is to try and help you... and to try to protect you from being "slymed" over and over.

We want you to be the best you can be.. and happy as a tune on a fiddle.

La dee da...

I am not sure I know these initals (RWJUH) you used above.

Are you talking about Robert Woods Johnson Clinic by any chance?

If so...

You said...

"I can't deal with another doctor who tells me I'm "out of shape, look perfectly healthy, nothing is wrong."

We call those type of doctors... "ducks".

(quack quack)

At least that is the word we use here on the board... but I am sure many of us have other names we don't use for them, at least in mixed company!!

If you are considering going to the place I mentioned above...

Hmmmmm..

OK..

If I say don't go.. she will go. She already did that once.

hehehe

She is a tuff one to deal with here. What to do? What to do?

Ah HA!

Reverse psychology here... maybe that will work.

OK..

My choice is GO!!!

They have such WONDERFUL doctors there.. and they know everything about Lyme and co-infections too.

They will be nice to you.. treat you with respect.. and be really concerned about helping you.

NO NO NO!!!!

NOT REALLY!!!!!

I can't even say that garbage and feel good about it.

On the list of places NOT to go to for Lyme.. this place is in the top 10... for sure!!!!

Run, run... save yourself!

Get out now!!!

Don't cross their threshold!

Don't waste your time! Don't waste your money!

I would rather lick ALL the barnacles and snails off the pilings on the MILE LONG pier in St. Petersburg, FL... than go to RWJ Clinic for help with Lyme disease.

I would rather chew through bullet proof glass and be bitten by 600 snakes... than go to RWJ Clinic for Lyme disease.

I would rather swing by my ears from the edge of the Golden Gate Bridge while wearing nothing but hot chilie pepper paste.. than go to the RWJ Clinic for Lyme disease.

Catch my drift?

Perhaps you have a "Plan B"?

I do hope so...

If not.. please ask for assistance.

And remember..

Lyme disease can be complicated.

It takes someone with a brain to help figure this stuff out.

Unfortunately, people with brains are not on every street corner.. so you may not have the luxury of chosing someone close by, who also takes your insurance, and someone who can actually HELP you.

You may have to travel... most of us do.

You may have to pay... most of us do.

You may have to focus on getting better first and then moving on... most of us do.

Sorry it is this way now. Politics, money, and reputations of ducks are on the line... and until those IDIOTS figure out how to use COMMON SENSE... and how to READ... and grow a HEART...

We are all stuck in the middle of a greed driven nightmare.

Or as some have called it.. HORROR CITY!!!

Of course.. the above is only my opinion.

Chances are VERY slim that you'll find a real LLMD at a large hospital, teaching facility, or large medical university.
There are very few LLMDs around.

Please depend on the experiences of the people here on LymeNet. It will eliminate the guesswork AND the chance that you'll have another bad experience.

Bottom line - you need a LLMD with lots of "satisfied customers"!!
The "customers" here will be happy to make recommendations.

But I worry about searching too long and too carefully before getting into an office. I worry about the "deadlines" my illness may have that I don't know about, so to speak. I feel worse almost by the day and just want it to stop, I'm tired of waiting...for doctors, for tests, for results.

Maybe its a sign of my youth.

How long do the tests associated with Lyme take to comeback? I've had bloodwork for which I had to wait a month to find the results. Acck.

Thanks again.

I hope you find a good LLMD. Many good ones not too far from you I believe in NY and CT.

Best to you and your family as you move forward.

Samantha

You mentioned Type A personalities. For those of us who are A's, one of the worst things is to lose control of your life. That's what Lyme does. And even worse, it starts by taking over your body.

For me, I need to take control of my life back. One of the ways I did it was searching out a diagnosis. It took time, but I would't stop. When I knew a doctor was wrong about me, I found another.

It was exhausting. I spent a lot of time crying in parking lots outside of doctors' offices. (BTW - I think crying is one of the best ways to deal with the emotional load of this, it can be a great relief).

However, like you, I also wouldn't let it completely take over. I'm working full time and just started a part-time law program. I have classes every night, and I have to spend most of my weekends studying. And I still go out at least 1 night on the weekends.

I need to do this, it's how I function. But I adapted other things in my life - I have a cleaning service so I don't have to clean, I take lots of clothes to the drycleaner so I don't have to fold them, I eat really simple food that's easy to prepare.

On the side against pushing through - remember that you are a musician. If your hands hurt or the muscles around your chest hurt, you can't play your instruments. Please don't push to the point that you can't play.